Can you be more specific about what insurance you have? is it through an employer or not? You say you have a insurance through a private carrier that you got before you started on dialysis, but later you say if you switch to Medicare you'll lose your "Advantage plan." Is your private carrier plan a Medicare Advantage plan? If so, did you get it due to age 65 or disability?
These transplant programs may be reacting to the fact that they have had patients who had problems with Medicare Advantage plans and transplant and post-transplant coverage. If you have a Medicare Advantage plan, it should cover the same anti-rejection medications under its standard benefit (not its Part D) that traditional Medicare covers under Part B. To find out what your costs would be so you can share this with the transplant program, I'd suggest you find out from the transplant programs their exact protocol for immunosuppression (drug, dose, quantity) for the first year. Find out from your plan what your copay would be for these drugs. Ask if the plan has a cap on the amount you have to pay out-of-pocket each year and whether the cost of the immunossuppressant drugs would be counted under that cap. Can you afford that? If not, consider raising funds for those costs and sharing this plan with the transplant program. I've heard of patients that have done this through organizations that are non-profits that administer the money for patients and are able to give tax receipts to donors. You can find these programs on this website:
NOTE: Traditional Medicare's Part B premium for those earning less than $85,000/year (single person) will be $99.90/month in 2012-- not much more than you're paying now. Traditional Medicare will have a deductible of $140 in 2012 and Part B pays 80% of covered charges. What percent does your insurance pay per home hemo treatment?
To confirm what your insuance broker is telling you, you might want to contact your state insurance department (http://www.naic.org/state_web_map.htm) or state health insurance assistance program (find under "helpful contacts" on the www.Medicare.gov site) to ask if your state has any Medigap plans for people your age with kidney failure. Be sure to tell them you are currently insured and how.
One thing to point out to the transplant program is that if you obtained your health plan prior to having kidney failure, you won't lose this coverage 36 months after your have a transplant like you would with Medicare if the only reason you have it is due to ESRD. And if you can afford (or raise the funds to afford) the copay for your immunosuppressants, that should be what they want/need to know. Transplant programs just want to be sure that they don't put a new kidney in someone who can't afford or won't take care of it.
Finally, when you say you have to make a decision prior to the end of the open enrollment period, what enrollment period are you referring to? Part D's open enrollment period this year ends December 7. Part D as a stand-alone plan or as part of a Medicare Advantage plan will not pay for immunosuppressant drugs if you have Medicare at the time of transplant and get your transplant at a Medicare approved transplant program. Part D may pay for other drugs that you will need pre- and post-transplant.