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Insurance coverage for IVF and fertility treatment in general varies by state and by insurance plans. There are certain states that are “baby states,” and fertility coverage is mandated. These include Mass and IL (that I know of). I know that some larger West Coast companies that are progressive are providing fertility coverage for employees as well. Unfortunately, insurance plans usually don’t differentiate between needing fertility preservation for cancer or for general infertility – a plan has fertility benefits, or it doesn’t. It’s sad, as an egg retrieval for egg harvesting is tens of thousands of dollars (usually $20K plus). The meds alone are $5K plus. Sperm banking, on the other hand, is relatively cheap….several hundred dollars plus storage fees that are probably around several hundred per year. Another caveat is that a patient (female) has to have enough time before treatment to go through the stimulation/egg harvesting process. It’s easier for males, as sperm banking is usually a one-day affair.
There is an OncoFertility Consortium that I believe is run out of Northwestern. One reproductive endocrinologist that I know of that specializes in treating cancer patients/fertility preservation is Dr. Laxmi Kondapalli at Colorado Center for Reproductive Medicine. There might be a few others across the country, but it is a very small group, for sure. There is a definite need for more of them as we diagnose and treat (and hopefully cure) patients that are younger and younger.
As for the responsibility of pharma…..I don’t know, but I would think that they are required to report any relevant info in the post-marketing setting.