Being switched from MassHealth to MAConnectorCare 2B (Health New England). I'm in a clinical trial for a rare blood cancer and will be disenrolled if I cannot see my oncologist (who is not in HNE's network). What should I do?

I have a rare blood cancer and the only specialists for it are in Boston at MGH and Dana Farber. I live out in Western Mass. There are no specialists here. (But be aware that there is no "official" specialization in this – instead, a specialist is determined by how many patients they see with the cancer, how many research papers they've published about it, whether they conduct clinical trials, etc.)

I have been enrolled for a year in a Phase 2 Clinical Trial testing a drug which out of pocket would cost $1 million per year. The drug has been life-changing. As long as I continue to see my oncologist at the hospital in Boston, the pharmaceutical company will give me the drug for free as long as I live.

Unfortunately, in my part of Western Mass, there are no choices in plans for Connector Care. There is 1 plan only – Health New England. I have experience dealing with HNE. My late husband had Health New England when he had cancer, and they denied so many things. It was one battle after another to get required scans etc. And the biggest battle of all was getting his very complex surgery done in Boston at MGH. Health New England owns Baystate Medical Center and its affiliates so they have a vested interest in seeing that people only use those hospitals. We did prevail, but it was an extremely stressful thing to go through while he was also doing concurrent chemo and radiation.

So I'm wondering if anyone knows the best way to handle this and who should be contacted. I am due for a mandatory follow-up in June and time is short. Filing grievances etc, take a long time AFAIK. The main Connector Care number would just put me on the line with someone who would only know how to fill out applications and have no idea what to do about this.