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My husband and I found out that we are both carriers for CF when I was pregnant with my son. We had our son tested for CF at 11 weeks old and thankfully he does not have the disease. We want to have another child but now that we know we are both carriers we are considering PGD (prenatal genetic diagnosis) in order to reduce the chances of having a child with CF. We were told that we had to write a letter to our insurance company requesting they cover the procedure. Has anybody had any experience with this? Did you manage to get insurance coverage and if so do you have any advice for us? We would not be able to afford the procedure without coverage since it costs about $23,000. Any advice would really be appreciated! Thanks!
I believe Sherry092 posted on this last year. Was able to get coverage from her insurance company....?
Thanks so much!!!! I did read her post but she had no responses so I'm not sure how it worked out for her. Hopefully she was able to get the coverage. I was hoping somebody else might have some more info for me, especially advice on how to convince the insurance company to provide coverage.

You must have missed some of my replies- my post started with my PGD approval, the process, my embryo report... I'd go back & check it again if I were you.

We were able to get PGD covered through our insurance company by writing a very detailed, heartfelt letter. Not many people have been able to get this covered by insurance so I am glad you're on Healthboards- I doubt you'd find many other success stories out there. They covered almost 100% and we didn't even have IVF coverage on this plan. Here's some letter writing tips that made our letter a successful one:

1. I explained our situation, the odds of it happening again, briefly what CF is and detailed our medical bills for my son's first year of life (with photo copies).
I then went on to explain that we had no intention of raising our son as an only child, but wanted to expand our family in the safest way possible (I would use this almost word for word because I found out that insurance companies cannot prohibit you from expanding your family).
Then explain PGD (cut and paste from a website) and how it reduces the risk to almost nil. Be upfront about the cost and remind them of present and future needs of people with CF-- perscriptions, hospital stays, the vest, transplants, etc. While initially PGD is expensive, over time it is far less expensive than the cost of care for a person with CF. This was my basic outline for the letter.

2. Tell them there are no procedure codes for PGD and that this cannot go through the normal approval process.

3. Make sure you call and find out how to send this to their first level review team, if this gets sent via regular channels, it will probably be discarded. Noone knows what PGD is and any random clerk will not know what to do with this info.

4. Appeal to the emotions of the person reading your letter- the fact that you are trying to prevent this disease from happening to another human being, that knowing this process is available, but not being able to afford it is completely unfair to your unborn child.

5. Noone but you can write this letter-- my IVF clinic has been unsuccessful 100% of the time- they do not want to hear from doctors or office workers, they need to hear from their client, the one paying the premiums.

Sorry this is so lengthy, but clearly I am very passionate about this. I was lucky enough to get pregnant my first round of PGD/IVF and am due in approx 3 weeks :bouncing:

Good luck...
Thank you so much for all the great advice!!!! That is exactly what I needed to hear. We are hoping that we can convince our insurance company to cover PGD. I have been doing research both on CF and PGD so that I can include as many detailed facts as possible in the letter to help make our case. I will definitely go back and find your previous posts. Congratulations on your new little bundle of joy!!!!!!! If you think of anything else that might help our case please let me know. Thanks again!
I am so happy to find women talking about CF and IVF. I, like kerrig found out during pregnancy that my husband and I were carriers on the DeltaF508. No family history, but my father who passed away before we found out was extremely active in the Cystic Fibrosis Foundation. I grew up knowing so much about CF and loving these amazing children. Amazingly we had 2 boys already who tested free with a sweat test and our baby was born a carrier but does not have CF. We felt we had already beaten the odds so, after much consideration, I had a tubal ligation. We knew there was a possibility that our family wasn't all here yet so we began saving for IVF. I feel it's time for another pregnancy yet financially we are not there. Reading Sherry's letter has opened a new door. I have already started the negotiation process. Thank you for your brave stories.
Hi- I'd love to hear where you are in the negotiation process. I have a million comebacks if your insurance company questions anything.
Just want to wish you all the best- its an amazing journey
I am in the process of trying to get PGD covered by my insurance. Both my husband and I are carriers of CF and have one healthy baby girl. I am trying to explain that I am not trying to get IVF covered just for the sake of getting pregnant but for the prevention of a disease. I am on my third appeal and have been denied coverage so far due to the fact that they simply see it as IVF coverage and are denying it across the board. I have had my OB write a letter explaining the situation and I have tried to be thorough in my explanation of CF/PGD/IVF. Any ideas or thoughts from you would be appreciated since you have had success in this situation. Thank you!
Here's what I would say:

**Please first make sure that your insurance company fully understands PGD, cut and paste info from a website, anything- and only refer to this process as PGD Pre genetic diagnosis.

In regards to the denial of my PGD claim, please read the follow to further clarify that this is NOT a simple IVF or fertility treatment claim.

My husband and I are not infertile, we were able to conceive our daughter naturally, without any problems. Unfortunately in the process we found out that we are both carriers of Cystic Fibrosis, and with each pregnancy, we have a 25% chance of having a baby born with CF. We were able to beat the odds once, but are now chosing to expand our family in the most responsible way possible. There is a clear difference between needing IVF for fertility, and needing PGD with IVF for medical reasons, so please keep this in mind during the approval process.

I do understand that the cost of PGD is considerable, but also know that the ongoing care of a child with CF far surpasses this expense. For instance the cost of a breathing vest:$15,000- $25,000, lung transplant: $100,000, countless office visits, tune ups, monthly perscriptions for enzymes, ADEK, antibiotics, nebulizer treatments, feeding tubes, etc. Although PGD is an upfront cost, it virtually eliminates the risks of any future burden on you, our insurance company..

There is also a quality of life issue that a price tag cannot be put on. How can we, in good conscience, take the risk of expanding our family naturally, knowing that the science of PGD is available?? How could I explain to my child that CF could have been avoided, but we just couldn't afford it. We never intended on having just 1 child, and its not fair that our family tree ends here, simply because we're not risk takers. PGD is not the way I dreamed of having another child, but how could I put our family through the agony of CF, unnecessarily??

I do know that Anthem Blue Cross covers PGD in certain circumstances such as ours. It is not unheard of for an insurance company to consider the odds and the costs, and the health and well being of their insureds, and to make a decision that is based on common sense. This is why I am bringing this matter to you, the review committee, to see the human side and the financial side, of a very difficult situation. I hope you are able to see pass the initial IVF claim and denial, and really understand what I am asking to do, expand my family through Pre Genetic Diagnosis, and eliminate the chances of having a child with Cystic Fibrosis, and eliminate the financial burden it would place on your insurance company if that should happen.

--- Hope this helps, don't stop fighting!!!!!
Here is an excerpt from a newspaper article that was written on our family, focusing on CF, newborn screeening and PGD. We were able to change Anthem's way of considering PGD and they have now made it a policy. Paste this into your letter, if you'd like. Insurance is a business, why can one do it, and another not. Also inform them that this was a first round approval- if you choose to use this. It was written 9/12/2004

"In the procedure, doctors give female patients drugs to increase the number of eggs they produce. They remove the eggs and fertilize them with sperm. They then wait until the embryos have developed to eight cells. They remove one of those cells to find out if it's free of the defective gene that causes a particular disease. If it is, the egg is implanted back in the mother's womb.

The procedure costs about $20,000, which Anthem Blue Cross and Blue Shield agreed to cover.

Anthem spokeswoman Karin Nobile said it is Anthem's policy to pay for PGD if there is sufficient medical evidence and the genetic disease can be identified in an embryo.

"Our mission is to improve the people we serve," Nobile said. "I'm very glad this person saw that, in word and deed."
I cannot thank you enough. I have written similar letters but your information is much more thorough and the details about the cost of treating someone with CF is very helpful. Thank you [B]soooo[/B] much. I am anxious to have another baby. I will keep you posted on our progress.
I'll keep you in my prayers :angel:
Tomorrow my husband and I are taking part in a teleconference with our insurance company,their attorneys and doctors. This is part of a second level grievance review. I plan to fight like mad to get our IVF/PGD covered. I just wanted to thank Sherry092 for her help in this matter. Your story is an inspiration to me and your letter was invaluable.
Any more ideas or arguments from anyone are appreciated. I hope to go into this meeting with as much material as possible. The main factor is that my husband and I are not infertile just trying to prevent a fatal disease from being passed on to our next generation. We are both carriers of the delta 508 gene.
Thank you.
Oh My God!! I am crying as I type!! I am so happy for you!! :bouncing:

I would definately mention Anthem BCBS paying for this for me and we had NO IVF coverage at all. There is a responsibilty on the insurance company to not just TREAT illness, but to PREVENT it if at all possible. Insurance is a business, if their competitor can do it, so can they. Have them call Karin Nobile at Anthem if they need to. Look up her #

You & your husband would not choose to have a procedure to conceive, so this cannot be considered an easy way out. Your are doing this to prevent your unborn child from having a deadly genetic disease.

They know the cost of treating a child with CF (that is THEIR biggest risk issue) you are totally eliminating this risk, by subjecting yourself to this procedure. It is not fun, its painful & time consuming- but to ELIMINATE risk, this is what you're willing to endure to EXPAND YOUR FAMILY.

The ONLY way PGD can be performed is with IVF- there is no other way. The chances of you getting pregnant on the first try are very high, because you're not infertile- so this probably will not be a procedure that needs to be repeated 3-4-5 times in a row like most infertile couples. BIG SELLING POINT!!!!!!!!!!!!!!!!!!!!

Please ask me anything- tomorrow is a big day & I want to supply you with all the ammo you need. Be strong, you are their client. You are not asking for breast implants, this is not frivolous- this is life & death. I'll check back all day long.

:angel: prayers for you :angel:
We had our teleconference today and both my husband and I fought like mad to make the insurance company understand our situation. We are waiting now for their final decision and will be notified by mail probably by Tuesday of next week. I was able to use the information that [U]sherry092[/U] gave me as well as the article that was written about her family. It was unbelievably helpful. I will let you know how everything turns out and thanks so much for the ammo that I needed to drive home our argument in this case.
I guess it really comes down to dollars and cents in the long run and what an insurance carrier is willing to pay for. I feel like it is a no brainer given the cost of care for a child with CF compared to the cost of the PGD procedure. Unfortunately, I have long since stopped trying to figure out the rationale of most insurance carriers. All I can do now is wait.
Again, MANY thanks to sherry092 for all of her help and good wishes.
After DS spent the first 4 weeks of his life in the NICU after having undergone surgery for a bowel obstruction for meconium illeus BCBS actually contacted DH about the total charges $169,000 and asked if someone else could possibly cover these charges, that maybe we had OTHER insurance to help defray the costs? Hello?! Was a complete surprise to us that DS had CF, our state doesn't test for carriers.

Our doctor recommended synagis shots to help prevent the RSV virus. Insurance company wouldn't cover them -- they cost $3200 once a month for 6 months. Our attorney wrote a letter to BCBS explaining that if DS contracted RSV there could be at least a two week hospital stay ($40,000+) and possible lung damage. We were approved a few hours later.
So SO Happy for you K!
I have a good feeling about this! Once you get that far in the process, you know they're taking you serious.
Can't wait for Tuesday!
I'm holding my little PGD miracle as I type- its an amazing journey & worth every minute.
Well, unfortunately we received a letter today from our insurers upholding their denial for coverage of the PGD. It is devastating news but I feel confident that I fought as hard as I know how to to get them to understand our situation and reverse their decision. I guess it just comes down to dollars and cents for the insurer. They keep coming back to the wording in the insurance contract that states,"they will not cover any form of IVF." It is WellPath Insurance and apparently they are more conservative in their coverage than BCBS.
I am still unbelievably grateful to Sherry for her advice and knowledge. I have learned so much during this process. I guess we need to look at our budget now and figure out a way to possibly afford the PGD out of pocket. People spend more money on cars these days! I have to look at it that way and proceed with a positive outlook. :D
Thanks again for the help AND support. I have not given up.
You are taking the news like a true champion. I am amazed at your graciousness , even through such disappointment.

I would write one more letter, when you're ready. Please know that I am so proud of the way your handling this, but I am....irrate. If you're not ready for this now, I truly apologize.

Inform these geniuses that you will now proceed to expand your family, naturally. That they should be prepared to cover the cost of CVS or amnio- (which is not 100% necessary when you do PGD)- and if its positive, be ready to cover immediate surgery in case the newborn has meconium ileus and needs to repair the blockage . Have a VNA ready during RSV season, because a nurse will have to come to your house and administer the RSV shot at $1,500 a dose for 5 months ( they dont do it in a dr.'s office), pre cert the nebulizer, albuterol, and enzyme prescriptions. The monthly visits to the CF clincic, xrays, blood work, etc. And lets not forget the cost of of psychiatric therapy that the two parents are entitled to, because they were not able to prevent this from happening to their child because they could not afford it. And these bills will incur within the first year of your child's life, if it is born with CF. Have someone crunch those numbers!!

Tell them you are forwarding this information to your newspaper and your state's Attorney General.

I would tell them that you will wait to hear back from them and there must be some compromise you can come to. At the very least, they can pay for the PGD portion of the process and you will cover the IVF portion- since they're SO hung up on the IVF thing.

Keep doing what you're doing- I wish I could have done more. Lets stay in touch, please.
It [U]is[/U] infuriating and senseless given the circumstance. I truly believe that Wellpath is banking on the fact that we will not get pregnant naturally and they will not have to pay for a child with CF??That is the only explanation I can come up with because otherwise why would you not pay for the PGD to prevent having to pay for the care of a child with CF.
I have a friend who works for an insurance company and he said that because companies change insurance carriers so often WellPath is likely hoping that if we had an affected child it would be on someone else's bill. That could be another explanantion for their denial.
It is disheartening to say the least. Your letter was a good pep talk and I plan to write to them again.
I'll will keep you informed. Thanks :) .
Did you have an attorney? If not might be a good idea to get one regarding this. BCBS wouldn't cover ds's synagis shots for RSV. Attorney wrote a letter and faxed it to the insurance company -- we were approved that afternoon. Those shots would've cost us $3200 a month for that 5 month period.

We didn't know DS had CF until a few days after he was born. Normal pregnancy. No family history. When he was born they thought he had meconium aspiration -- pooped in the womb before he was born. Nope, he had meconium illeus -- bowel obstruction. Had to be lifeflighted to a major city when he was less than a day old. Spent 4 weeks in NICU at the cost of $169,000 just for the hospital care -- we later received bills for the surgery, doctors, tests, xrays, air ambulance ($1000), regular ambulance... Then he developed an infection and spent another two weeks at the local hospital -- that time it cost $40,000.

We have insurance with his drugs we have to pay $15 plus 20% of the drug cost. Imagine the first time we had to buy tobi -- OUR copay was $536 for a month's supply -- that drug costs $3200. Pulmozyme runs about $1500, enzymes about $200, antibiotics, nebulizer, nebulizer drugs... We go to a CF clinic 4 times a year. -- each doctor we see charges for an office call -- $200 x 4, dietician isn't covered $50, respiratory therapy, xrays, blood tests, pulmonary function tests... We don't have a vest yet. We'll have to come up with 20% of the cost of that -- vests cost $16,000 so we'll need a few grand.

CFers need extra calories -- if your child is put of prescription formula like pregestimil -- I think it runs about $50 a can, as opposed to $15-22 for regular formula such as infamil. Pediasure or scandia shakes for extra calories -- I take milk, butter, peanut butter, carnation instant breakfast to DS's daycare 'cuz he needs about 1/3 more calories than the average person.
We did not have an attorney but I just wrote a letter to Office of the Attorney General and hopefully they can give us some assistance.
The letter our attorney wrote to the insurance company about the RSV shots basically said what we and the doctors were saying all along -- if DS contracted RSV, there would be an extended hospital stay at the cost of x number of dollars. Went on to mention that CF is a devastating disease and that we as parents have enough to worry about with treatments, medical costs, keeping DS healthy and should DS contract RSV there could be legal ramifications, emotional pain and suffering was implied.

Our attorney accomplished within an hour what we'd been fighting for over two weeks. Basically if this would've ever gone to court, who was the jury going to be in favor of --- big bad insurance company or child with a terminal disease...
I spoke to the director of the Managed Care Patient Assistant Program with our Attorney General this afternoon and it was quite encouraging.
She is definitely going to help me appeal the denial further and we are hoping to get WellPath to cover the PGD/IVF treatment or at the least just the PGD part of the procedure.
Great job-- you go TIGER!!!!!!! :bouncing: :bouncing:

Please be sure to tell her about the newspaper article & Anthem bcbs, have her contact Karen Nobile at their headquarters to get their reason for approving and new policy in force for PGD. I'm certain she will have statistics & info that can be related insurance company to insurance company. Sorry, not trying to be bossy (but I am a Leo)- I want this sosososoooooo badly for you.

This IS something that is being done and it makes logical sense. With the Atty. Gen. office on your side, you're an even BIGGER force to be reckoned with.

Well, I have some good news and bad news. First the attorney general's office has been very helpful but they too, are coming to the end of their grievance process with WellPath. The reason for denial is an exclusion of "all reproductive assisted technology". We have argued the case and presented them with Sherry's situation and coverage but at this point they won't budge. We are now contacting the state insurance board to see if we can change this from a grievance to an appeal.
I am hopeful but I am also trying now to just get the PGD portion covered because my insurance contract does state that they will cover genetic testing and diagnosis if it is used to treat or find a medical condition. Tricky, but I hope it will work. Any ideas on a ballpark figure of the PGD portion of procedure?
The good (or great) news is that I went ahead and made my appointment to begin the PGD process on Feb. 20. If all goes well I could be pregnant sometime this spring. We will still fight to get it covered but at this point we want to go ahead and not allow an insurance company to dictate our reproductive future. Wish me luck on both fronts!
I know your message was written over a year ago. I was wondering if you know if anyone else ever had any success. I just wrote my letter and I am scared to mail it.
Any other suggestions?

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