Living in The Wrong State for Treatment of Rare Conditions

Zebra behind

Ever feel like you’re simply living in the wrong state to access the treatment you need for your condition? You may be right. There are lots of factors that enter into the equation which determine access to appropriate care; insurance and what it covers, how many doctors take your insurance, who if any specialize in your condition, and if there are teaching hospitals who are funded to provide services to treat patients with your condition.

In some states (especially the southern states where there is considerable resistance to anything new and cutting edge) patients with rare or relatively unfunded “orphan” conditions might find themselves stuck with maintenence care at best, and abusive and negligent care at worst, hot potatoed around literally (or figuratively, meaning that little or no investigation is done nor direct treatment offered for those conditions for which few resources exist where they live).

All this can be compounded when the only chain of teaching hospitals in your state has no clinic for your condition and views patients with such conditions as a money pit, and this decides to cut their losses…on you.

I recently saw my immunologist for a follow-up, the one specialist in Georgia for Mast Cell Activation Disorders and told him all the difficulty I had been having locally in getting my Dysautonomia treated and that it seemed no doctor was invested enough to make it happen. His response was very disheartening. First he said it was “sad.” That may be, but my message is bigger than that and it calls for more than just empathy. It is a call-to-action. He seems to understand best of all my doctors what I’m up against. He also understood how aside from money, willingness on the part of the doctor is a factor as well, and that if a doctor cares about you personally he or she might help you despite financial motivations, yet ironically, even he can’t seem to pick up the ball others have dropped. 

He admitted that I was right that there were no local Neurologists who treat or really understand Dysautonomia in Georgia, and told me that the two whose names he’d given me were no longer taking these kinds of patients. (I had already checked this out).

He explained that the paperwork involved in referring people out of state to necessary medical consults isn’t covered by insurance so therefore isn’t billable, and with the increasing trend to pack patient caseloads back-to-back for services they can bill for, doctors tend to push such requests aside until they never get done. I remarked that a one-payor system would have probably fixed alot of these issues in that it would de-incentivize doctors from prioritizing duties based on money and the load would be evenly distributed enough so that doctors wouldn’t have to have so many patients they couldn’t do them all justice. The defeated look on his face said it all. “Yes, it would, but that will never happen in our lifetime.”

The only suggestion he could come up with is that I offer to pay a doctor to do the necessary paperwork involved and that maybe then it would offset their making time (possibly seeing one less patient during a given time-slot). 


Was it perhaps his subtle way of asking me to pay him to do this paperwork? In retrospect, I thought maybe it was.

This approach may or may not work, and if I were to try it how much money would these doctors expect, and might they still not get it done? Then how would I go about getting a refund? Keep in mind that any amount I might pay out of pocket is money that I’d be deducting from food and other necessities. I live way below the poverty level and I don’t really have extra money just lying around that I don’t need for other things.

It seems to me that this is another issue that needs to be addressed by congress in updated legislation, not a cost passed onto the customer. If this is a common problem in modern medicine that results in lack of access to appropriate care then I believe there should be a billable service code created for the paperwork involved in such referrals, because it’s not OK for patients to bear the brunt of what is really an insurance issue.

Doctors need to push for this as well if they truly care about their patients’ best interest.

As I sat in my immunologist’s office I said to him “Just imagine how much better I could be if I had the necessary documentation and could come back to Georgia, then my local doctor would go ahead and write the order for the Saline infusions. Currently I am bed-bound for the most part, unable to fully take part in many of my interests because I just can’t be out of bed that long without getting too fatigued and flared up.”

“Yes, patients have great success with Saline and feel much better on it, but most doctors want to try drugs like Midodrine first, and tend to use Saline as a last resort because of the possibility of infection. They normally have to put a port in because peripheral veins don’t hold out indefinitely.”


“True, but in my case the benefit is worth the risk. I’d rather be proactive than wait around for another emergency admission like happened a few years ago and possibly more complications of not acting, since we don’t know what the root cause of it is still. And really, what kind of life is it to be stuck in suspended animation for the rest of my life? Besides I’m taking about my limit of pills right now. I don’t think my stomach will tolerate much more” The doctor had to admit I had a point there. This was all hypothetical of course, because no doctor is even offering me Midodrine or any other approved medication for my Dysautonomia. They’re all waiting for someone else to do that.

He did have one possible work-around though, and that was to put me on an H2 Blocker, on the off chance that it might work to control the Dysautonomia since it might be the Mast Cell Activation Disorder causing it. These drugs are actually antacids that have the added effect of blocking histamine.

It was a good idea in theory, but after about 2 or 3 weeks of taking Fomatidine I seem to be having a paradoxical effect and my stomach is actually more acidic! This too is a known consequence of Mast Cell Activation Disorder. Medications can have unexpected and often paradoxical side effects in people with these conditions, as those triggers that elicit disordered Mast Cell response are often changing and unpredictable. For this same reason I had to switch initially from Benedryl because it was giving me Akathisia (inner motor restlessness) because it was centrally acting. 

woman taking medication

I cannot remember whether I mentioned in an earlier blog post that my current GPs office had led me on for about 8 months thinking they were working on the Medicaid prior approval paperwork for my trip to Vanderbilt, but I discovered the staff person who was supposed to have been assigned to this task had lied to me and to several Medicaid officials who were trying to help facilitate. When I attempted to ask the doctor why they had been dishonest, she skipped over this detail and tried to refuse to answer.

She’d made a call to my previous GP, the one I saw after I left Emory, and I was then under the impression that she would finish the paperwork and submit it so that Medicaid could approve payment for the out of town consult (as I cannot afford a 20% co-pay up front, nor the travel expenses out of pocket).

That doctor almost got it completed but then put her contact info in the wrong spot (the one for the doctor’s info I was going to Vanderbilt to see). The form had to be re-done and faxed in to Medicaid along with a summary letter of medical necessity.

Doctor Holding Medical Record In Hand

To save time I went through the records and wrote one up. All she had to do was sign it and send that along with my Piedmont BP stats, and the corrected 1 page form. My deadline was fast approaching when she balked again, first at her own diagnosis, then at the cover letter.

I said to her nurse that if she wanted to write her own letter that was fine with me but we were quickly running out of time and Medicaid would need a few weeks to process the application. The nurse responded that “The doctor is not going to do that.” I told her that this was getting ridiculous! We were almost done, and it seems this doctor had an objection to every little thing, and that it is costing me my access to care.

Well, the deadline in early June was just a few days away and I had not heard that the paperwork had been completed, so I had to call Vanderbilt and try to reschedule (for the 4th time).

This time the coordinator told me their rules had recently changed and that my medical information that went with the original referral paperwork was too old so she wouldn’t be able to reschedule until the entire process was done from scratch with more recent data.

Medical records and doctor's tools

Now there are more tests that are required to be submitted than before (one of which included Cardiac Catheterization). The previous GPs nurse spoke with the referral coordinator and found out that added requirement.

So the upshot is that these doctors delayed until the whole thing lapsed, rendering all the data basically null and void. The last I heard from my former GPs nurse is that she was going to call my current GP and let her know she would have to be the one to order these required tests since I was no longer under my former GP’s care, and that she would call me back to tell me whether she would or not.

Doctor looking at brain scan film

I’d said to her that if the current one is not willing to gather the necessary updated data that I will obviously need to find another GP, because this is leaving out a big part of my healthcare. The former GP’s nurse never called me back. It has now been several weeks.

When I last saw my current GP to have my pain medication refilled she noticed my Diastoloc blood pressure was somewhat elevated. One of her students had the insight to look at my last visit’s reading and commented to her that last time it was only the Systolic that was elevated.

blood pressure

The doctor looked like a deer in the headlights and suggested putting me on a medication for high blood pressure. Both me and my aid exchanged shocked looks.

Shocked man sculpture

I reiterated to my doctor, it’s not “high blood pressure in the classic sense of the word. It’s dysregulated blood pressure. That’s part of why I’m supposed to go to Vanderbilt’s Autonomic Dysfunction clinic! If it were that then both numbers would be high and it would be quite a bit higher than that.”


That is data that Vanderbilt can use but it seemed to go right over her head. I doubt she can get her shit together enough to connect the dots and keep track of these things to compile a letter about my medical history even if she was willing to. This GP seems scatterbrained and she even misremembered where I was going, thinking it was John’s Hopkins.

She seemed not to have even a rudimentary understanding of what Autonomic Dysfunction is.

BP and Heart Rate

I have to re-educate her every time I see her and then she doesn’t retain it the next. She does not remember my medical history even after being my doctor for a year now, and admitted she hadn’t taken the time to pull my chart until I came in that day. She claims she has too many patients. Well that’s her doing, not mine. 

Sensory Overload

It would be too disruptive to move to another state but I think I would if I did not own my own home here and have the established aid services in place.

For those on Medicare and Medicaid it is a huge undertaking to relocate to another state because most states require that you be a resident for at least 3 months in order to switch over to their state’s Medicaid system. That means that you likely would have to pay 20% in cash, because only Medicare is federal and fully transferrable.


If you get medical transportation services too, you have to find out whether those are even offered in the new state of residence and apply from scratch. That requires that you have a doctor certify need (most likely one in that state only). Since you would have no local doctor yet who knows you it is unlikely that one would certify you for those services for at least 3-4 months (best case scenario).


I actually considered relocating but after doing the research deduced that doing so would probably not be feasible given my advanced level of disability. It would really only work if I had someone with a car I could stay with who was willing to help me out until I got everything established and medical support in place. I don’t know anybody like that.

My liver specialist had told me on my last visit that he’d be willing to refer me to the Undiagnosed Diseases Network, so I will bring him the application and list of requirements. That program (as long as it’s still recruiting) is fully funded, travel and everything, and is in-patient for about 3-4 weeks, so I would not need prior approval from Medicaid and the paperwork that goes along with it.

The only downside is that the competition for slots is huge, and they turn away more applicants than they accept because their funding won’t cover that many patients per year. It is basically a lottery, chosen by a committe, and they are abundantly aware that a certain number of those who don’t make it will die for lack of care for their complicated conditions.

Lying Down

For those lucky people who do get accepted, there are some of the greatest minds that medicine has to offer, and testing that cannot be obtained anywhere else. It is not a guarantee, and not all patients come home with a complete answer, but at least many of them are closer to solving the mystery of their condition(s) than they were before. It is at least a significant leg up to those who otherwise would remain in a vertitable no-man’s-land indefinitely with medical problems too difficult for their local doctors to solve without more advanced data.


Nevertheless, I plan to keep trying for Vanderbilt and beating the bushes here for doctors who will help me get there and treatment beyond.

I may die trying, but the alternative is worse. Without hope there is only death, and for many chronically ill patients that is often a welcome relief from a road that stretches on and on with no oasis on the horizon.


For the rest of my life I remain committed to getting an enforcible Patients’ Bill of Rights in place and will continue to fight and advocate for the rights of the chronically ill whether or not I get the full care I seek for my own conditions.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s