Tuesday, June 26, 2018

Getting serious about moving to Durham, NC for GBM treatments

Last week I got to know there is a recurrence in my GBM related brain tumor. Since then I have been exploring the possible options to deal with the situation and have concluded upon moving to Durham, North Carolina to be near Duke University for the wide array of cutting-edge treatment options available for treating Glioblastoma there as the best option.

While my medical team in Longmont, CO are capable enough to keep me going when things are normal, I don't think they provide access to the most recent in glioblastoma treatments. The only one clinical trial I am being offered in Longmont is the Study of DSP-7888 Dosing emulsion in combination with Bevacizumab. I am not too excited about this option as Bevacizumab (trade name - Avastin) is considered to be a last-resort option for GBM patients. 

Since my head is about to be cut open to deal with the tumor recurrence, I would rather it happen while being part of this innovative and highly successful treatment from Duke University where a genetically modified form of the poliovirus is infused directly into the brain tumor via a surgically inserted catheter. 

One of my GBM friends on facebook travels to Durham, NC from her home in Florida every 3-4 months for a 45-minute office visit. That is an example I would have liked to emulate. However, the insurance complications make it not an option for me. I am on an HMO plan through the Obamacare exchange in Colorado, and that makes the consultation at Duke an out of network expense. It would help if I can switch to a PPO plan, but there are none offered through the Obamacare exchange in Colorado. 

Hence taking the next available option - though at a high personal and financial cost - of moving to Durham, NC for getting treated at Duke University. 

Here is what my medical insurance agent recommends about moving to North Carolina:
Good Afternoon Mr. Murthy
If you are considering a move to North Carolina it will be something you have to really commit to. Do the research to get onto their ACA. So we know when we need to cancel your state coverage here. This will give you a special enrollment event to move onto their state coverage and they will have to cover your preexisting condition. Right now any options off the ACA will not cover cancer or will only cover a low dollar amount that would not be adequate to your needs.
This is the best advice I can give you if you are seriously considering relocating. 
So the main thing is I should continue to be under state coverage through the Obamacare exchange for the sake of pre-existing condition coverage. Moving to employer insurance will not likely have the same coverage. 

Hence the first thing I am working on is to figure out how I can transfer my medical coverage from Colorado Obamacare exchange to North Carolina Obamacare exchange. All other things can be handled when this important step falls in place. 

The other things to handle are as follows:
  • Finding freelance work/full-time job: There are quite a few good job opportunities for ruby on rails developers in the Research Triangle Park Area; so it should not be too difficult for me to get myself well-situated work-wise.
  • Building a network of friends: Couple of my college friends live in the area, thankfully. They will be our gateway for building a good community of friends in the area. Also, I am sure we will find it easy to build friendships in a community with a dozen Indian grocery shops and a dozen south Indian restaurants.
  • Daycare for Aisiri: Google maps throw up a lot of options for Daycares in the RTP area; so we should have no difficulty finding one that is convenient for us.
  • Apartment to stay: Same case as with Daycares & Indian Grocery shops, we will have a good set of options to choose from.
  • Cost of moving: Will probably cost around $10K to do a full-service move of a full 2-bed apartment with a car across the country; this will be one of the items towards which I will need to raise money through a GoFundMe campaign with financial help from friends and well-wishers.
  • My wife's medical professional exams: My wife will continue with her efforts at completing the US Medical Licensing Exams from Durham, NC and take up her Residency next wherever she gets it, and that would probably involve another move across states for us. 

That is all I can think of now. Next step: Setting up a GoFundMe account to raise money to help me with the immediate future.

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