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Cystic Fibrosis Message Board


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Kerrig,

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...
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!
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.
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.
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!





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