Is anyone started to give their sons injections for growth hormones? We are curious of the cost associated with it. We havent began yet, but it looks to be expensive even after the insurance has paid their portion. Is anybody using this treatment and how much is it costing you? Is there any assistance out there?

Thank you for any answers you can give.

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We had to have it prior authorized by our insurance, once it was approved we only pay a co-pay of $50 for a 3 month supply. I would suggest you contact your pharmacy insurance carrier and ask what growth hormones are covered, do they require a prior authorization and then if approved what would your co-pay be. It's the easiert place to start. I know that the companies will offer some assistance, I know there are other families here on PPMD that have gone through that process.
My son was found to be growth hormone deficient through the longer of the tests they can perform, so we qualified on our insurance prior auth without too much trouble, but that does not hold true for all.
Good Luck!
It sounds as if it is the same for us. Although we are looking at $150 per month for our co-pay. I havent looked into my mail order prescription program, as finding this out late Friday for 3 month supply costs.

Also has anyone heard of what the Pfizer Bridge Program comes into place in all this?
Most of the companies that make growth hormones have their own bridge program. They will supply you with the product free of charge while working on the approval from your insurance company. I would assume approval is harder to get if you son is not growth hormone deficient. Is your son on any state programs? Medicaid picks up the amount that my insurance company doesn't cover.

Janine
Daniel has been diagnosed as growth hormone deficient. Daniel is not on any state programs including medicaid. For some reason my income blocks him from receiving any benefits...I would need to quit my job, have no retirement ...to receive it.

The insurance has been approved...our portion $150 per month. My job has been on the rocks for the last year and Im unemployed more than I am employed

Janine said:
Most of the companies that make growth hormones have their own bridge program. They will supply you with the product free of charge while working on the approval from your insurance company. I would assume approval is harder to get if you son is not growth hormone deficient. Is your son on any state programs? Medicaid picks up the amount that my insurance company doesn't cover.

Janine
There has been a lot of press lately on growth hormones - a lot of negative press. I would check and double check all side effects of offering growth hormones to DMD children. Our doctor at CNMC in DC feels that growth hormones should NEVER be given to DMD children. I'm very curious to know your reasoning behind wanting to do this. I find, quite often, that parents know far more than the doctors in the DMD world.
I completely see where you are coming from and would have done the same myself had I been in your position. Our doctor, who can be upsetting at times, mentioned why offer growth hormone when a DMD boy is on steroids - which can stunt growth. He believes the two do not work well together as one drug is working towards one thing - only to be undermined by another. I'm not sure I completely understand or agree, but what you say is very enlightening. You sound like you are totally on top of things.

Rhiannon Hubbard said:
irishgirl said:
There has been a lot of press lately on growth hormones - a lot of negative press. I would check and double check all side effects of offering growth hormones to DMD children. Our doctor at CNMC in DC feels that growth hormones should NEVER be given to DMD children. I'm very curious to know your reasoning behind wanting to do this. I find, quite often, that parents know far more than the doctors in the DMD world.

My son Carter started on GH prior to his DMD diagnosis for SGA (small for gestational age). He qualified for GH treatment based on his birth size and lack of growth by age 2 and we started him on treatment before doing the growth hormone stimulation test (that shows if there's a deficiency or not). Once we started seeing Dr. Wong she said that she would feel more comfortable knowing if he was indeed deficient or not, so we took him off treatment for a few months and did the stim test last summer. It turned out that Carter does have growth hormone deficiency, so he was started back on GH immediately. The way it was explained to us by both Dr. Wong and our local Endocrinologist (who just came from Cincinnati Childrens about 2 years ago and worked with Dr. Wong and her team) is that GHT is a little controversial right now with DMD boys. Some Dr.s think it's a possible future treatment and are optomistic about the way it appears to build muscle; but others worry about any effects it might have on their hearts and bring up the point that being short can be of benefit for these boys, less body to move around and less work for their hearts. But that since he's deficient, he needs to be on GH treatment, DMD or not. GH isn't just for height but for the overall development of the body and organs; it's something that all of our bodies NEED. They both told us though that if he wasn't deficient it would be something we needed to think about more and decide what route we wanted to go. At that time it would be a question of quality of life and if the severe short stature would have a negative impact on him. Prior to DMD entering our lives, the pros of GH for SGA outweighed the possible risks that could be associated; but I'm not sure what we would have done if his test came back that he was making adequate GH. We may have taken a break from treatment for awhile until we reached a point where his height became a big deal for him, but I'm not 100% sure. In a way it was nice to find out he was indeed deficient so that the decision was made for us.

I hope all this makes sense.. Did CNMC say why they feel DMD boys should never be given GH? Is it because the effects on DMD boys are still not completely known?
Irishgirl - The endocrinologist at CCMD - has worked with alot of DMD boys who have used GH Therapy. One of the side effects is stabilizing muscle cells and long lasting effects on pulmonary and cardiac muscles. We spoke locally to an endocrinologist about it and we are proceeding with it. Some side effects can be read about on drug co's web sites. They sound like they are more remote than common. Where is your doctor located and does he treat many DMD boys? I have seen it used more and more at CCMD. Char Burke

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