Team Players: OH-IO
We have all talked about the importance of assembling a team to support our wide-ranging needs and treat our MS. It is important – no, let me change that to critical – that the team we assemble is one we are comfortable with, we trust, and they are willing to listen to us and not just dictate directions.
So what happens when our team starts to come apart? There has been more than one of us who has sidelined a player on our MS team – permanently benching someone who doesn’t work well on our team and calling up someone from reserve. That is perfectly normal and acceptable. It might be a matter of different opinions about treatment or styles of communicating – whatever it is this decision usually isn’t made lightly. There’s always that concern the next team members will be another unknown and we don’t know if we can do better.
But what happens when one of our team members becomes a free agent and is picked up by another franchise? Breaking up the near perfect team is a difficult thought to wade through and that is what I am currently faced with. The co-captain on my MS Team since my diagnosis in 2008 is my neurologist, Aaron Boster, M.D., who I have written about a lot, as well as my experiences at The Ohio State Multiple Sclerosis Clinic. I just found out he is switching uniforms and going to practice with a different organization.
It’s the type of news that will travel fast in the medical circles but not necessarily for his patients who might be reading this. I found out this important news in a very public way … I was attending a pharma sponsored talk given by a local neurologist who I have worked with on other projects. The same with the pharma rep – he and I have put together patient education programs in the past. Both of them know I travel a distance to see Dr. Boster and neither hesitated to ask me in an almost gleeful way what I was going to do now that he is leaving Ohio State.
Fortunately my husband was at my side and prepared to catch me if I went down with this news which came out of left field. I have observed several changes take place in the clinic over the past few months that had me wondering what was going on, but I figured their new administrator was just working on cost containment methods. I hadn’t envisioned an almost complete changing of the physician staff, but that is what I was told by the Rep and the Doctor that is happening. They said not only are the MS specialists leaving, they were beat out the door by the epilepsy neuro specialists, or at least some of them.
The duo voluntarily offered details, enough to make me wonder how I would make it through without this key player or the other ones I have come to know over the years. I took a deep breath, and mustered up the courage to ask if they know where he is going next. And then I exhaled a deep sigh when they told me he’s just moving across town to the other team. I didn’t want to have to get on a plane to see him on the other side of the country.
Now mind you my loyalty is not to the practice but to my team’s co-captain, so when I got home I immediately began to research the new franchise and I have to admit I am impressed. They are large and obviously have the resources to pull off a very ambitious expansion – this includes constructing a brand new building to house a comprehensive neurorehabilitation center. The building plans include everything one might need - labs, MRI, clinic space, infusion center, rehabilitation facilities, and even patient beds should there be a need to be admitted and monitored long term. MS patients at this new place will no longer be just one of many different diseases needing help, but in a facility that almost exclusively treats neurological disorders.
Honestly, I get a bit excited when I look over their website and see the vision they have for the future of MS care. They even have a live web cam where I can watch the construction of this new mega-facility, which is due to open in mid-2015.
IF Dr. Boster will continue to have me as a patient, and my insurance will allow me to switch to this new franchise, I will make the change. I have no problem wearing different team colors as long as I keep my co-captain.
It is somewhat mind boggling to think of all that will need to be done- do you remember what it’s like to become a NEW PATIENT anywhere? Yes, there will be lots of paperwork. I will probably have to set an appointment to “meet” the doctor and arrange for the release of my medical records to the new place even though he already knows everything about me. I will have to work through the patient support program for my Tysabri to switch my participation in the Touch Program and get their continued financial support for the monthly treatments. Ironically, just the same day I heard this news I finalized my paperwork and pharmacy support for 2015. I hope switching to a new clinic won’t be a major hurdle to clear. People move all the time – they shouldn’t care that this is only 5 miles away, right? What is guaranteed is I will need lots of time to make the necessary phone calls to switch my services.
It might be especially tough going back to being the model patient as I learn the new procedures and faces on the team. I’ve spent all this time not only with my neurologist, but also the nurse practitioners, the nurses, medical assistants and receptionists - I know them and they know me, warts and all. It will be sad to say goodbye when that time comes. Maybe some of those smiling faces will pop up at the new place to continue to cheer me on - they really are wonderful and supportive professionals and I will miss them. Remember, because of my Tysabri infusions I am there at least once a month. That’s a lot of time with the entire roster and not just the all-stars.
And then there is the research study I have been in for almost two years for extended release baclofen – the study has moved on to the open label part, which means I get the drugs until the company decides to stop. I’m not sure if it is on the market yet, and if not I guess I will have to go back to the other formula. I’ll have to talk with the OSU MS research staff and figure this one out.
Why am I taking the time to write about this now? If any of you have ever ‘lost’ a doctor who moved on, you know that it usually comes as a surprise. There’s some code of ethics or maybe it is even a matter of law that doctors can’t talk to their patients about leaving. It may be a strange form of non-competition clause that keeps doctors from telling their patients straight out they are leaving. A while back I got a letter from another doctor who left this same practice –all it said was he thanked me for trusting him with my medical care, without a clue as to where he went. Honestly I was surprised, not because he left but because I had never been his patient. At least he sent a letter- in the past I have had appointments transferred to other doctors because the original doctors were no longer at a particular practice, with no explanation at all. I always feel bad for the staff who must field the questions about changes but aren’t allow to share the real answers.
If you are one of the 4,000 people with MS who are treated at The Ohio State Multiple Sclerosis Clinic, and fortunate to have an appointment with one of these doctors at the MS clinic in the next few weeks, I want you to have the chance to tell them how much they will be missed and say your goodbyes. And you deserve to know they are leaving before they are gone. Then again, you may be like me and refuse to let my dream team be disbanded and follow the doctors to the other side of town. I look forward to seeing what the new locker room and team facilities are like.
Wishing you well,
Have you ever experienced any of the following financial struggles due to your MS?