Friday, January 17, 2014

Impatient Voices

I want to tell you about what happened during the insurance payers' panel at the DiabetesMine Innovation Summit back in November. I've been meaning to write this up for some time now.

TL;DR version: some patients stood up and yelled at some insurance executives and then I had to share a plane ride home with one of them.

We were asked to politely write any questions on a post-it. A post-it.

We listened as each of the five panelists representing insurance companies (payers) gave their perspective.

You've got to understand, they lamented, it's REALLY hard for your insurance company to figure out how to decide treatment coverage for large diverse patient populations and still be competitive.

Many of the patients in the room were shifting uncomfortably in our seats. At least everyone at my table was. We were having a hard time hearing how hard it is for the big insurers.

Corinna Cornejo, with whom I've worked on committees and shared countless phone calls - whom I have always found to be savvy, smart, diplomatic - leaned across the table.

"I kind of want to stand up and say 'I don't give a $h1t about your balance sheet'."

"You should," I mouthed off. "I'll stand up with you."

And then...she did.

The air seemed sucked out of the room for me. $h1t.

That was my cue. I jumped to my feet and started talking, my feet ever comfortable on rickety old soapboxes. I spoke about access. Asked where the payer stood when pharmacy benefit management companies (like Express Scripts International and CVS Caremark) change 780,000 patients' medications (via formulary exclusions) without consulting their doctors or the patients affected. Without letting them know how they can discuss it with their insurance provider or how they might advocate to continue their therapy. I asked why they couldn't take a patient-centered approach to explaining those changes to their customers. I spoke about how hard it was to find a phone number or a website or an appeal form when all we want as patients is the opportunity to discuss our needs, our therapy, or our medical history with the people high above us making decisions that affect our very lives.

"Where is the letter with every denial or change in service that tells me whom I can call at your company or how to file an appeal? Where is the patient access to YOU the insurance company? Patients in this room represent the top 1%, most activated, most engaged patients," I explained. "If I can't navigate this system to fight for what I need, how can the average patient?"

Apparently, no matter how fluorescent you make a post-it pad, the act of scribbling out my question with a sharpie on it is just not as satisfying as the opportunity to use my voice.

Though the Sweetly was noticeably absent.

Soon after, it was time to break for lunch.

Of all people for me to bump into in the corridor on the way back from the buffet line to my lunch table, I ended up stuck in a breezeway with Mr. Richard Feifer of Aetna, the most vocal of the five representatives. He has a background with pharmacy benefit management (used to be with Medco) and he was a doctor himself.

I explained to Mr. Feifer where my concerns came from. I wanted him to understand where the passion came from that fueled our interruptions. I told him a little of my patient history.
  • I had been denied insurance for years on the private market regardless of ability to pay.
  • I'd married my husband early to get on his plan.
  • I'd been denied for multiple devices.
  • I'd had my coverage cancelled when I was 6 weeks from delivering my first child via c-section, leaving me with over $10K worth of payments rescinded back to the date they retroactively canceled my coverage and putting me in utter panic about how we would afford the surgery without insurance.
  • I told him that now the test strips and insulin that had been working just fine for me and my physician for the last 8 years were being changed arbitrarily due to a formulary exclusion.
"Where is the consideration for my physician's clinical experience that led her to decide that this was the best drug choice for me with my history and situation?" I asked him. "I resent that a third party interferes with my doctor's prescribed therapies for me."

My physician is easily "confused" by the many treatments available to her, he explained, and, if she will call my insurance company, they can direct her to covered, proven treatment options. "Why is the hysterectomy rate in Miami three times that of Boston?" he said. Surely it's because physicians over-prescribe treatments. "It's the payer's job to HELP your physician explore the right treatment option." It's also my husband's large employer's fault, he explained to me. They want to look like the good guy, but they are working with the PBMs to reduce costs. Turns out the fault is everywhere but the payer, apparently. Poor, unappreciated payer. Trying to do the right thing for everyone.

Mr. Feifer and I parted ways after that long private conversation, agreeing to disagree, and I finished my lunch with a bitter taste in my mouth.

After lunch, I tweeted that I would be silent.

Don't make promises you can't keep, Melissa.

It was time for the post-its. The moderator asked the pre-selected questions that had been chosen during the lunch break, but this time, the energy in the room was buzzing. Everyone felt comfortable engaging with them now - with their sharpies AND their voices.

Including Smartly Mouthed, which maybe should be my new twitter handle.

When Mr. Jim Dudl of Kaiser spoke of someone coming into their provider's office with "simple diabetes" and requesting an insulin pump, I bristled.

"I'm sorry, which type of diabetes is the simple type?" I blurted out. "Because I think we would all like to sign up for that one." I got a few laughs, but seriously... A treatment plan may be simple from a clinician's standpoint, but I guarantee you, to the patient, their disease is challenging and frustrating, whether they are asked to make lifestyle changes and take a pill or whether they are asked to struggle with variable basal rates and complicated medical devices.

When the payers talked of how they restrict test strips for people because test strips go to waste and patients don't comply with a testing regimen, I really balked.

"I'm the one willing to bleed on that test strip for a better health outcome," I called out.

Heather Gabel stood and spoke of being reduced to a fraction of the strips she needed and explained, with frightening candor, that that meant that she would probably check her blood sugar as often as she needed and then just do without test strips until she could refill her prescription the next month.

"What happens when my doctor prescribes a therapy and I meet the criteria for your medical policy, but I'm still denied coverage for it?" we asked.

"Well, that wouldn't happen. We wouldn't deny coverage of a treatment if you meet the criteria on our medical policy for it," Charles Stemple of Humana said.

Like hell it wouldn't, we patients said.

"I couldn't ethically work for a company that didn't want the best outcome for patients," he said.

Mr. Stemple, I BELIEVE you, but then where does that message get lost? What are you communicating down through subordinates to your employees who deny these claims and reject appeals as part of the standard protocol?

We were clearly told by this panel that it is the patient's PHYSICIAN who should be interfacing with the insurance company - that they have physicians on board to deal with our physicians appealing the claims. They don't have enough staff to field our individual calls.

"We have call centers to deal with patients," we were told. The phrase "call center" was spoken with a tone of condescension that made my hands tremble with rage. As my Dexcom glucose line shot to the roof and my receiver beeped incessantly, Tamar Sofer-Geri leaned over to me and asked if it was my blood sugar or my blood pressure. Ha.

Mr. Feifer described how patients can "google" a medical policy and read it, though it may be in complicated physician speak. Manny Hernandez pointedly asked "Why do we have to google your medical policy? Why can't I find it on your website? Why can't a version be written that a patient can understand?"

More and more people stood up to voice their concerns to the payers. Dr. Nancy Bohannon and CDE Jen Block eloquently spoke out on behalf of health care providers, asking the payers why they have ignored mountains of documented evidence by repositories like that of the T1D exchange that show that more frequent blood sugar testing results in tighter control for type 1. (Oh, there's data on that? We don't know anything about that.) The clinicians asked how they are to reconcile the many hours of uncompensated telephone time spent appealing for thousands of patients in their care.

Device makers spoke. Doctors spoke. And then, at one point, an expected voice hit a high note that had us erupting in applause.

Sandra Cook, the fifth panelist and representing the Arkansas Healthcare Marketplace, turned to her fellow panelists from Aenta, Kaiser, Humana, and Capitol Blue Cross and said, "I pay premiums. As a patient and a payer, I should be able to advocate for myself."

Drop. The. Mic.

Isn't that the whole point? That insurance companies have been misusing our premium dollars on overhead and not on our healthcare and we have no access to those who make decisions about our quality of life?

Mr. Feifer was getting noticeably edgy. At one point, he threw back my comment about the patients in the room representing the patients who are committed and activated in their care - the top 1% - and said something about how we didn't understand that the "rest of patients" with diabetes...

"I speak for them!" I shouted out. Call me Kanye at this point because apparently I had gone too far. Mr. Feifer blew his top.

"Let me finish!" His voice reached a fever pitch. "I have participated in these panels all over the country and I have never been treated like this. Never been attacked like this." He talked of being "irritated."

Sir, if this much interfacing with your customers is too much for you, then you really do live in an ivory tower, I tweeted.

Folks, I promise it was not all me. I was not the only rabble rouser in that room. But I am telling you the parts where I said my piece and then some. Because that is why I call myself an advocate. I was invited to that summit (my first invitation anywhere, and possibly my last) because I had an idea about patients being able to test their own insulin viability - I didn't go to cause trouble. I had no idea I would be standing up for patient access to payers.

Corinna was right to stand up though - regardless of how you may feel about her turn of phrase. And I had plenty to say once she threw open that window.

It's time that insurance companies established patient advisory boards. It's time we were treated like we are more than by-products of their companies' services to physicians and employers.

I navigate the waters reasonably well for myself. Each time an insurance company has tried to deny me access, I've found a way. Fought a denial. Secured an attorney. You know, as I stood and complained about the PBM formulary exclusions and how they left the patient out of the conversation, I had actually already seamlessly switched to the new insulin and test strips that were the covered alternatives. But this isn't about me. It's about all of us. It's about the 10% for whom that covered medication isn't going to work and how much anxiety that change is going to cause them. It's about providing even an illusion that they care when they deny a claim or a medication.

I am unsure that everyone in the room understood. I waited for a week or two to see how the dialogue would be written up. The first account I read made it sound as though a handful of entitled type 1s stood up to complain about not getting special treatment in terms of device access when they represent such a small minority of diabetes patients for these payers. I'm sorry if that was your takeaway. It makes me wonder if we conveyed what we really meant to convey.

Corinna, a type 2, did not stand up to speak because she wants the newest tech gadget for her simple diabetes. I did not engage those executives because I resent getting turned down for this or that.

We just want to know "Where is the voice of the patient?"

The payers all admitted to having no patient advisory boards within their companies. Guess what though? In part because of some of these conversations had that day, Kaiser now has a patient advisory counsel. And some Kasier patients from that event have been asked to be a part of it.

I believe two things about using your voice loudly though, and I will share them as a voice teacher, a professional singer, and a health advocate.

1) Know how to project. You have limited time and a limited audience and you have to use your voice effectively and choose your words carefully. Make an impact. Don't waste their time or your opportunity. It's a one-shot deal.

2) You had best be ready to stand by what you said; it may come back to sit next to you on the airplane.

Yes, my friends, that is exactly what happened. The next morning, who should be my seat buddy on that long flight back to Dallas but one of the payers from the panel? Mr. Jim Dudl of Kaiser. What are the odds that the universe finds my smart mouth that amusing?

It can't be him, it can't be him. He smiled at me. I am sure he was thinking I hope that isn't her. He opened his laptop and Manny's business card stared back up at me from his keyboard.


My colleagues in the twitterverse double-dog dared me to take a selfie with him.

I sat for a while considering the awkwardness. But mostly considering the opportunity. Here we were, one another's captive audience for over 3 hours. What to do?

I don't waste opportunity.

I turned to him and thanked him sincerely for having been willing to engage in a really hard conversation with a lot of very passionate people.

We went on to talk for hours. We talked as we got off the plane. Talked well into the airport terminal. I talked about where insurance companies went wrong with patients. He explained to me about how, when Kaiser limited its patients to one fast-acting insulin, that freed up money that they could use to cover the medical devices we were clamoring for. We understood one another better. We talked of Corinna and Heather and where this passion and fear came from - of how much we patients had on the line when we spoke so passionately. He told me about his daughters and his passion for wanting to better serve the Spanish-speaking patients Kaiser had in Southern California and about why he felt the Kaiser model worked so well. I explained about how, to my older family members, type 2 diabetes didn't feel simple.

We talked about how including patient-centered language in patient communications could make the patient trust the company to do right by them. How simple phrases like "if you find that this medication change doesn't work for you" could make it feel to the patient like they gave a damn whether their cost benefit analysis and drug exclusions affected real people's anxieties. He said, "But that's easy. We can do that." Yes, it is. And thank you.

It was amazing. Two people from such different worlds who had had such a rocky day the day before. We parted as people who understood one another so much better. And we captured it. To prove to Twitter that I am fearless.

I don't regret the things I said that day. And I truly feel that our interfacing with the payer side of the industry was a game changer in patient advocacy.

I applaud Amy Tenderich for getting the insurance industry on board and attempting to keep it civil (I do want to apologize that I don't know how to wait for the talking stick, Amy). And I wish I could recognize each of the many advocates who spoke up that day and wrote about it. Excellent posts include I'm Sure All Patient Concerns are Absurd (Scott) and A Skeptic's View: Anger and Hope in Palo Alto (Wil).

But most of all, scarecrow, we couldn't have done any of it without the courage and quick-thinking and passionate heart of Corinna Cornejo...who reminded some bureaucrats that their ability to stay competitive in their industry matters very little to the patient fighting for her life.

Disclaimer: I was invited to attend the DiabetesMine Patient Innovation Summit on a scholarship awarded to me for a submission to their 2013 contest. The scholarship covered lodging, transportation, and meals for my trip.


  1. Melissa -- thank you so much for this candid account of our concerns. And thanks to all the vocal advocates present for making the Innovation Summit what it's meant to be: a forum for open, candid dialogue about the diabetes world and what patients need.

    Please keep doing what you're doing -- and let us know about the Kaiser move and other outcomes of note.

    I am so happy that our Patient Voices Contest brought you out!


  2. Oh my GARWD!
    To start, I don't always pay attention to the medical system in the US. I recognized it's fraught with turmoil and confusion but I'm not always on top of what's going on.
    I am that way because I tend to avoid topics of conversation that centre around that. Then I read this post. Why? because I fucking love you! Because you are strong and opinionated and smart and damn RIGHT about everything you advocate for. It's not just you, it's the entire diabetes community standing behind your guard. Damn right for you to speak up. DAMN RIGHT!

  3. Thank you for representing me. My blood boiled when I read the part about Mr. Feifer "being treated like this." He clearly has no clue that that's how so many of us feel every time we call to ask why a product or service isn't covered. If I had a dollar for the hours and hours I've spent on the phone arguing with insurance companies, being "treated like this," I'd be living large in my own ivory tower. It's infuriating and mind-boggling how little they know about the patient experience. I hope some of them learned something and have the humanity to put that knowledge to use.

  4. Mel, I would stand up with you for diabetes patients rights any day of the week. Much love & respect.

  5. This is exactly the kind of barricade storming that we need to do more often. Congratulations on getting a conversation going and making them hear the patient voice!

  6. I was shaking reading this. I still am. I'm so proud of you I could pop.