The Importance of a Medical Advocate

It has taken the last two weeks for me to really digest everything that happened and how best to relay it to you anything more productive and informative than an angry rant about never getting a break.

Let me start by saying that obtaining pharmaceutical treatment for any cancer or chronic illness is drastically different than that Z-pak for your last case of the flu. This comes from my own personal experience on both oral and IV treatments. 

After multiple rounds of tests to find the best treatment for what ails you, your doctor prescribes and then the fun begins. The drug then goes to your insurance company for preapproval (PA) and a request to the pharmaceutical company. You are enrolled into a prescribing program and are assigned a caseworker. Depending on your insurance, the medication and your doctor, that might be the extent of your hassle, especially if your medication is oral. It is usually shipped to your home monthly and you will have periodic check-ins from your caseworker and a registered nurse from the pharmaceutical company as well as your doctor.

If your treatment is in IV form and needs to be administered by a medical professional, it starts to get a little sticky. The next question is how does your doctor obtain the medication. Do they order it directly from the specialty pharmacy on a case-by-case basis or do they bulk order and store on-site? Odd question but it turns out it’s quite crucial as to how your insurance to covers it because the former makes it a pharmaceutical (prescription plan) benefit while the latter qualifies it as a medical procedure under general medical benefits. Confused yet? It’s taken me three years to get to this level of understanding so don’t worry if you’re not quite following. I still don't get some of it the first few times they explain it; and sometimes, neither do they.

Now your insurance will more than likely only cover the treatment under one plan or the other. For instance, my insurance categorizes my infusions under my medical plan so I have to go to an oncologist because my neurologist orders for each person. So now I have my doctor (neurologist) and a site of care doctor (oncologist) where I get my treatments. The neurologist prescribes the drugs and the oncologist gives them to me. My doctor prescribes for six months at a time as restricted by the pharmaceutical company and my insurance approves a year at a time, or 13 treatments. On top of that, I have to go to an office in network that is specifically trained by the pharmaceutical company to administer their drugs that also obtains the medication within the confines of insurance regulation. Then toss in one more wrench; most infusion centers, by policy, do not infuse patients that are not their own. To give you an idea of what all of those hoops and requirements mean when finding a site of care, there are only TWO offices in all of Manhattan that qualified. Talk about options.

All of the biologics I’ve taken thus far for my MS have worked this way; they are not available through your traditional neighborhood pharmacy (even the oral biologics). When the process works, the patient has little to do but show up, pay your copay and receive your infusion treatment. When the process breaks down, a new circle of hell has been entered. I wish the story ended there, bringing light to just one labyrinth that goes into simply obtaining life saving treatments; sadly, it does not.

Still with me? How are those Venn diagrams and flowcharts looking?

It is worth mentioning that I’ve been taking the same infusion therapy for three years now. March 27th was actually my anniversary as I started my fourth year. I schedule my entire life by these appointments. I have them scheduled a year in advance and can count out four weeks between treatments like clockwork to organize travel and work and anything else that might take me too far from that tether to an IV. Up until then, it has been a rather seamless and painless process. It all happened behind the scenes between all of my doctors and other parties. This time however, everything fell apart and I had no idea.

On Tuesday of the week before my treatment I received a frantic call from my oncology nurse who was running through the following week’s patients and stumbled upon the fact that I was no longer authorized to receive my treatment with no reason why. She had no idea if we had discontinued treatment or I had relapsed or any of infinite other scenarios had occurred; it is oncology after all. No one had told them anything. No one had told me anything.

Insert the emphasis of being or having a medical advocate.

I called the pharmaceutical company. They were the ones that had unenrolled me from their program. The pharmaceutical company tells me that they have neither the PA from the insurance company or the reauthorization from my neurologist. I know nothing of this. No one has told me, the patient, anything and in the last three years I have never had to be directly involved in the process. It had always rather magically happened behind the scenes and I just showed up for someone to stab a needle in my arm for a few hours, once a month; nope, not anymore.

Well I have a copy of the PA so I email it to them with all of the verification codes they need but I’m still missing the reauthorization from my other doctor and my oncologist can’t submit it because they are not an authorized prescriber; they can only administer. So I start calling and emailing my neurologist.

From Tuesday of last week, until Monday of the following week at 7:45pm, I called and emailed and texted both my neurologist (who was out of the office) and the pharmaceutical company four times a day every day to not only stay informed on my own medical future but also make sure that shit gets done and my case didn’t fall into what I imagine to be a black hole of lost paperwork. Please excuse the language. And in that week I have learned one thing: being and/or having a medical advocate to fight for your best interest is crucial. I also now understand so much more why and how people end up going off meds even when they’re covered, paid for and approved. Again, when the system works, it works. When it fails, it is an epic catastrophe.

Now for the really the good part. It is not the policy of the pharmaceutical company to inform the patient or the site of care if the status of enrollment has changed UNLESS treatment has been discontinued by the prescribing doctor. If they’re waiting on paperwork, you’re basically SOL unless you have an amazing nurse like mine who checks her patients’ statuses and treatments a week ahead of time. If it weren’t for her and the accidental discovery, I would have shown up Monday morning and been told that I couldn’t receive treatment, or worse they would have given me my infusion and ultimately risked their accreditation to infuse anyone in the future. If it weren’t for her, the week of fighting for my own well being would have started Monday, the scheduled day of my treatment, and put me a week behind on my monthly treatments, risking my overall health and ultimately my remission. Thankfully I have just enough understanding of the system and the medical jargon paired with more than enough raging bitch to be my own advocate. If you aren’t that person, you need to find one. I’m also fortunate enough to have had that person in the beginning to set the example when I wasn’t able to do it for myself and when I didn’t know what I know now; a translator, a fighter, a partner, an advocate.

At 7:45pm on Monday night, I was finally approved and good to go. I called my oncology nurse Tuesday morning and she squeezed me into a fully overbooked schedule to make sure that I received my infusion "on time." Robin is a hero.

Had I not spent that week calling four times a day to check on the status of my enrollment, not forced them to keep constant contact with my neurologist’s office instead of every two weeks, I would not have received my treatment that day, a day late but received nonetheless. Had my nurse not stumbled upon the issue, I wouldn’t have received my treatments. Had I not worked my way up the phone tree at of the pharmaceutical phone lines, I wouldn’t have received my treatments.  Had I not argued my way through rep after rep and fought through the scripted answers, I would not have received my treatments. Had I not kept reps on the phone while connecting me to the next tier, I would have been hung up on like so many times before. I learned, I fought and I succeeded. Had I not had anxiety meds, a support system to vent to and puppy dog cuddles, I would have lost it and even more tears and anxiety attacks would have flowed. I was my own advocate and I am exhausted.

Everyone needs an advocate. If you don’t have one and can’t be one, the system will walk all over you because at the end of the day we need that multibillion-dollar pharmaceutical company or insurance company more than they need us. We have no other option. They have people like us beating down their door. We fight and beg and do more than half the work but they still get the tens of thousands of dollars for each month’s treatments. It’s our lives. It’s our productivity. It’s our health and we need to fight for it because we have no other options.

This is how the system works and it is not just insurance that causes problems. It’s easy to blame them but in this case, they’re not the ones who dropped the ball. The bigger issue as that it is really hard to fight for your health and well being in an already grossly confusing and intricate system when you are left out of the conversation regarding your own medical care. How is it that as the patient, I am not a part of the conversation? How is it the policy to NOT contact the PATIENT? Why is it that after three seamless years the line of communication completely broke down despite knowing months in advance that all of these renewals would be needed like every other year? Who is the priority here because it certainly isn’t the patient? Imagine trying to do all of this around life, a career and other treatments like physical therapy and occupational therapy. My priority should never be fighting the bureaucracy to get what I need at the failure and oversight of others. My priority should be fighting my disease; to keep it at bay and to keep myself a fully functioning member of society.

Again, I need them more than they need me. This whole ordeal made it transparent.