Palliative Life

Maura J. Lipp, MD

People say the word advocacy quite a bit, but what does it really mean? For physicians, we’re always advocating for our patients. Sometimes in ways you don’t even recognize. We advocate when we need to speak with insurers about what’s best for our patients, with every peer-to-peer call. During family meetings, we are advocating for the best possible treatment options for their loved ones. When we work within our hospital committees we are advocating for the best policies. Our entire profession is built on the idea of advocacy.

There are times, however, when we find ourselves, if even by chance, in the unique position of being both a patient and a physician. That affords us the opportunity, or rather the responsibility, to use our personal stories for advocacy. You may not feel as if your voice matters or that anyone will take interest, but I assure you that is not the case. Let me share with you my story:

I was working as a Critical Care physician when I was diagnosed with multiple sclerosis. I was started first on a drug called Tecfidera, the cost of which at the time was around $7,000 dollars a month. It’s one of a few oral options that had recently been considered in practice as first line therapy. Even though my insurer did not have this on the list of approved agents for first time use, they approved it right out of the gate without a shred of difficulty. Between that and the manufacturers copay program, I paid nothing out of pocket.

I had been on this for about a year when I suffered a significant relapse. I had an episode of myelitis, treated with steroids but I couldn’t work for a period of time. I required both physical and occupational therapy to help with recovery. It was an exceptionally frightening experience, not knowing what deficits would be permanent and if I’d ever be able to return to my career. A career I’d worked 30 years to achieve. Fortunately, I did, but given that occurred while on Tecfidera, my MS specialist decided it was best to escalate my therapy and so, she prescribed Tysabri. This is where the trouble began.

I expected there would be some hoops to jump through, Tysabri at the time cost just over $19,000/month. It took six months for me to be able to get access to the medication. Six months! Every day that passed, the risk of having another relapse increased. My previous relapse occurred while on therapy, at this point I was on nothing. My life was in their hands. Appeal after appeal, my treatment was denied. Even the manufacturer’s program for “quick start” so you can start treatment pending insurance approval, is not entirely helpful. What they don’t tell you is that they will only give you one month of treatment, if your insurance approval process takes longer, well then too bad for you. In fact, that is the exact words one representative told me “Sorry, too bad for you, it’s not my problem.” Countless hours on the phone with the insurance company, half of that time is spent just trying to get the right person in the right department. Each time you call, you must tell your story repeatedly just to hear “oh, that’s not my department let me send you to…” It is a frustrating, rather I should say gut wrenching and infuriating, process that almost feels intentional. All designed to wear down your resolve and just accept their conclusion.

What was the problem in my case? It was a step therapy policy, which of course is all too common. Some states have legislation dealing with this issue, others do not. My insurance company stated that because I “didn’t fail first line therapy” they wouldn’t approve it. I did in fact fail first line therapy, which they paid for. But because it wasn’t on their formulary, which incidentally hadn’t been updated for 10 years, they couldn’t recognize it.

All of the time spent, the insulting phone calls and the fear of not having treatment just left me completely defeated. I thought, if I’m feeling this way and I’m a doctor who understands this system, imagine what it is like for the average patient. What happened next was divine intervention.

I had just hung up from a call with insurer, who was particularly rude, and for the first time broke down in tears. I made up my mind I was just done fighting it at this point. When, phone still in hand, my next patient rolled in. It was a 30-year-old who had suffered an out of hospital cardiac arrest. When his father came in, he told me that his son was diagnosed with multiple sclerosis a few years before. He was working at the time and had commercial insurance.  His neurologist prescribed a medication, but his insurance would not approve it. Appeal after appeal, he grew weary and decided he was done trying. He was so disillusioned, that he stopped seeking ANY medical care. His condition worsened, he moved in with his dad who built him a ramp, improvised other accessibility equipment, caring for him the best way he could. In the previous 3 years, his son became legally blind, was unable to walk, lost bladder control and had swallowing difficulties. He suffered cardiac arrest because he aspirated his breakfast that morning. Not only did he not receive medication to treat his condition, but he also didn’t receive any physical or speech therapy. He didn’t receive any treatment for symptom control of any kind. He and his father at the very least could have benefited from palliative care. Instead, they were left alone, and this young man spent the last 3 years of his life in agony. He suffered a severe anoxic brain injury and passed away the next day.

“I failed my son, I failed my son.”

“Sir, you didn’t fail your son, our system did.”

When I was speaking with his father, that poor man just cried and cried. He kept saying repeatedly “I failed my son, I failed my son” Believing that what had happened was his fault, expressing to me that perhaps if he had only known about multiple sclerosis earlier, he could have intervened and prevented all the suffering. As he was saying this, all I kept thinking was “sir you didn’t fail your son, our system failed your son.” Things like this should never be allowed to happen.

I couldn’t believe at the time that this was the exact patient I would have just as I myself was in the middle of my own insurance battle. But after that happened, I was determined to file that one last appeal. I didn’t expect it to be successful, but I felt like I had to say something, I had to get this on the record. Not just for me, but for that young man as well. For every patient that experiences this.

My intention was to exhaust the appeals and strive for an independent review. Which of course the law says you are entitled to, however you must exhaust the appeals first. Which brings up the question, if an insurer allows for 5 appeals before you can reach this stage, the likelihood is that most patients aren’t going to go that far.

This time, I filed my own appeal on my behalf. I took all the documents my insurer had sent as well as their published “guidelines” for multiple sclerosis treatment. Right on the bottom of that document it reads when it was last updated. Which was 10 years previous. If you know anything about MS, you’ll realize that most treatments available now have come about in the previous 10 years. So, they were very far behind. Additionally, in the letters they sent me it included the name of the medical director who denied my case. They made a very big deal of saying “a board certified physician” reviewed your case. But that “board certified physician” was an Emergency Medicine physician NOT a Neurologist or an MS specialist. I did some additional research and found that the two main reasons why an appeal will be approved are the following: either it was a simple clerical error, or the member feels as if they didn’t get an adequate review. My situation was the latter.

I was very respectful in my letter, which of course you should be. I began with “I don’t feel I had an adequate review…first you stated that a board certified physician reviewed my case. Well, I too am board certified physician, in fact I hold four board certified but NONE of them are in Neurology” I went on to say how in the “real world” it would be against standard of care to have a physician of a completely different specialty go against the expert. I spoke about their outdated formulary and their limited guidelines. I even attached some research studies to my letter highlighting why the treatment my Neurologist had chosen was most appropriate in my case. I told them my story, the medical facts and knowing another doctor would be reading the letter, closed with “if you were me, and you had spent 30 years of your life preparing for a career and were perhaps one relapse away from losing it, wouldn’t you be writing a letter like this too?”

I overnighted my appeal, I was later told by an insurance representative that my letter arrived on a Tuesday evening, by Wednesday afternoon it was approved. I was Tysabri for 5 years without a single relapse. Here is where the advocacy begins:

About 2 years later, while working with The National MS Society, I was invited to go with them to Washington DC for their advocacy day. I had never done that before and didn’t know what to expect. The evening before we all went to Capital Hill, there was a dinner with of course some informational talks about the policies we were there to support and tips on how to be effective when speaking to members of Congress. These two young men came and sat at our table. They were both openly gay lawyers that had just finished a yearlong internship at the White House. It was fascinating to hear their stories, about the White House tunnels where you could still see the char lines from when it was burned by the British. Of course, there were all sorts of things about their experience I found incredible. We spoke also about how they felt working there, during the Trump administration and being openly gay men. It was surprising to hear that in fact the workforce was very diverse, and that they felt there was in no way any sense of discrimination. How all the things that are put in the media are largely exaggerated for effect. I suspected that but hearing it from insiders was reassuring. When meeting with lawmakers on Capital Hill, I heard that same theme repeatedly. There is FAR more bipartisanship than the media would have you believe.

Meeting with lawmakers on Capital Hill is something everyone should experience if you have the chance. We met with seven officials, some in the House some in the Senate. We met with both the lawmakers themselves and in some cases, with their staffers. Which, their staffers by the way were all professional lawyers, all highly knowledgeable. I don’t know what I expected but I suppose prior to this experience I just assumed they were all “interns.” They all give you their undivided attention. Perhaps that’s what they’re trained to do, even if they really aren’t “hearing” you. But sitting there, having them listen and in some cases take notes when you are telling your story really makes you feel validated. With every encounter I told my story about the young man. It brought tears to some of their eyes. I did it for him, for every patient like him and of course patients like me. It was remarkable to see that this is what happens all day every day. We walked around those Congressional office buildings, and it was nothing but group after group of people doing the same thing we were doing. We even joked because of course everyone is dressed up in their cause’s color. “Here comes the purple people again (Alzheimer’s).” We were the orange people. But I truly got a sense of how government, for all the bad things we say, still is a government for the people.

Another interesting thing happened, a DOJ employee heard that we were going to be on Capital Hill that day, so he left the Pentagon and came over to the Capital. He was waiting for us as we exited one of the Senator’s offices. It turns out, his wife had just been diagnosed with MS and he had some questions he was hoping we could answer. We spent quite a while speaking with him about his wife, for that he was very grateful. We were all moved by it, realizing that perhaps what we were doing was having a bigger impact than we originally thought.

About two years later, the Tennessee State legislature was considering step therapy legislation. I was again presented with the opportunity to go and speak to state lawmakers about this issue. We spent the day doing essentially the same thing but of course on the state level. Some of the lawmakers I knew personally. Once again, I shared my story and the story about the young man. It received the same attention. I was asked by one of the lawmakers, who was also a physician “what do we say to insurers who insist they need step therapy to control costs?” I thought it was a very honest question and an appropriate one considering they have pressure from people on both sides of the argument. I stated, as physicians we are all trained to use “step therapy.” A physician shouldn’t be reaching for the most expensive drug when there are equally as effective cheaper alternatives. If you are treating something like hypertension, this stands to reason. And whether we like it or not, insurance companies are businesses, and they reserve the right to protect their financial interests. However, the problem arises when this idea is applied across the board and in a manner that is not consistent with evidenced based guidelines. The people who suffer the most are people with conditions that are rare and don’t have clear guidelines about which drug to start when. Multiple sclerosis is one of those conditions. And with the increasing number of biologic agents, this is becoming a bigger issue. The one thing we can do, is perhaps not advocate for the end of step therapy, but make sure that it’s applied correctly. We need to make the process for patients going through appeals more transparent and smoother. There is no reason why it should take six months and an exhaustive number of phone calls. The specialists who know best about a patient’s rare condition also needs to be in the driver’s seat. We weren’t the only ones advocating for this. And I was just one of the people speaking that day.

I’m happy to report that in May 2022, the Tennessee State Legislature unanimously passed step therapy reform. It included almost verbatim all the points we made that day.

So, physicians and patients alike, you have more power than you think. Sharing your stories, while it may not feel as if anyone is listening, I assure you can drive change. So, get out and make your voices heard.