Fighting for the Health Care You Deserve

This post is going to be a bit more personal as it comes directly from my experiences this last month. There are times we are not given the health care that we deserve. (This is not always true. There are very many wonderful doctors and nurses who do way more than necessary in order to ensure we feel well treated.) However, people with chronic diseases must be ready to fight with insurances, clinics, and doctors about payment and treatment.

The last month I have been fighting with Mayo Clinic in order to get medicine. I stopped responding to my medication towards the end of July and my doctor had me stop doing my injections. At that time, we talked about several different clinical trials and decided on the one that seemed to fit me best, and was safest. However, a week before school started (so one of the last weeks of August), a nurse called telling me I couldn't go on this trial, although I had spent the last couple weeks assuming I was. She informed me about a different clinical trial, Ustekinumab, that was already FDA approved as Stelara for plaque psoriasis, saying that it was different from the anti-TNF medications (of which I have stopped responding to each and had strong dermatological reactions). I was really excited that there was something new out there. She told me I would only be able to have appointments in the morning because my doctor doesn't usually see patients in the afternoons (although I have during a different clinical trial). This didn't work around my schedule because I would have to miss roughly 6-8 of one of my classes (which I was told by the school I would probably have to drop it if I missed that many - it's a very prestigious, discussion based class). She said she would call back the next week and let me know what my doctor said. The day before classes started, she called and we started setting up appointments. When she mentioned that it would be in the morning, I reminded her that I couldn't do mornings. She responded by saying my doctor couldn't see me in the mornings. I asked, "Even after you explained my situation?" She had never asked him. An hour before my first class she called back, and I was told that Mayo wouldn't accommodate me. I was, instead, given a URL and told I could try to find other clinical studies and could see if another clinic could help.
At this point, I was flabbergasted. Mayo, supposedly the best clinic in the U.S., was refusing not only to accommodate me by having me see one of their other 30 gastroenterologists, but was unwilling to help me find a different clinic. Sayonara!

I had to make phone call after phone call, to different nurses and the appointment office, trying to appeal this and find help. Each one told me they couldn't do anything. I even e-mailed my doctor, with the only response being from the same nurse as before saying I could only come in the mornings.

I looked at the website given to me, but the only clinical trial I knew about was only being done at Mayo. As a last ditch effort, I called the patient affairs office seeing if anyone at Mayo would help me, or at least get me transferred to a different clinic because it's difficult to get into a big clinic without a refferal. After explaining my whole situation, I finally got a call back about a half hour ago explaining that I could come in the afternoons (except for the two days of infusion), and the nurse told the woman handling my case that  of course I could come in the afternoons. Tomorrow I get to call the nurse back and actually set the appointments up. Urgghh...
I guess the whole moral of this story is that you may have to spend many hours at the phone, but fight for your rights as a patient. You know what you need. Although you shouldn't have to deal with all this extra crap (Poop always makes everything funnier), it's another part of our disease.