Shannon, I believe there are five drug companies in the US that produce growth hormone. They are Eli Lilly, Pfizer, Genentech, and Novo Nordisk (sorry, I can't remember the fifth one.) Each one produces GH under a different name. E.g. Lilly's product is called "humatrope." Pfizer makes "genotropin." Genentech makes "nutropin" and Novo Nordisk makes "norditropin."
Each company also seems to have some sort of program to help patients afford the medication. Pfizer's program is called "the Bridge Program." Genentech's is "Single Point of Contact (SPOC)." And Norvo Nordisk's is "Nordicare." I am sure Lilly has a similar program, though I am not personally familiar with it.
Basically, these drug companies work with different doctors' offices to help make the medication affordable to those whose insurance will not cover it. What you are expected to pay is based on the company's assessment of your annual income. You will have to fill out a financial statement and submit income tax returns. Based on your financial status, the drug company will figure out how much your child's annual prescription of GH is expected to cost, and how much of that you are expected to fund from your own pocket. (Sort of like applying for college financial aid.)
In my experience with these programs, they are usually very generous. But, I suspect you'd have a much easier time getting covered by one of these programs if your endo's office made the call for you, rather than you calling the drug company directly, out of the blue. Have you asked your endo's office about this? If not, you could probably google each of the different companies, to find the right phone number and contact information, then have the endo contact them later.
Even with these programs in place, the drug companies will probably still want you to apply for coverage from your insurance company. If you are denied by the insurance companies, some of them will also help you submit an appeal.
BTW, because CAH is not an FDA approved condition for use of GH, insurance companies will almost always deny the initial request. However, it is definitely possible to win on appeal.
