When last I spoke to you all, my insurance had denied me approval for my combination therapy. Let me take in the way-back machine before I bring you up to date.
Back in June, I attend the American Society of Clinical Oncology Annual Meeting, aka ASCO. While there, I went to the Novartis booth to ask a question about Affinitor, which I was taking at the time. But nobody at the booth could answer my question, because I wasn’t a doctor. This has to do with FDA rules about pharma providing information to patients that might be medical advice, but it was still pretty frustrating that they hadn’t sent anyone who COULD speak to patient advocates. So, I tweeted about it, with a picture of me in front of their booth.
Novartis immediately responded to my tweet asking me to email them so they could talk to me about it. And their director of patient advocacy called me, and apologized that they hadn’t had anyone there who could speak to me about their drug. She said they’d never had a patient advocate come up their booth at ASCO before, so they hadn’t thought to have someone there could answer patient questions. And she assured me that they were rethinking this now that more patient advocates are coming to medical conferences. It was nice that my tweet resulted in such an immediate response.
Fast forward to my struggle to get my drugs…the fabulous patient advocate at Avera, who deserves a Nobel prize of some sort, helped me file for patient assistance through Genentech, maker of Avastin, and Novartis, maker of Mekinist. She filed the paperwork on a Friday, and on Monday I got a call from Genentech. They spoke to me for about 2 minutes confirming basic information about me, and then said “You’re approved. We’ll send the drug to your oncologist’s office.” I was elated to say the least!
Then came Tuesday evening. I got a text from #bestdocever saying Novartis had turned me down for patient assistance, because we were above their income cap. This is exactly what I had feared would happen. I started tweeting about it and googling similar drugs to see if maybe there was a different drug we could try to get access to. The Hubs and I started talking about getting legally divorced so I’d fall under the income cap. I slept poorly that night.
Wednesday morning I woke up ready to fight, and I began tweeting again and mentioned that I was filing an appeal of Novartis’s denial decision, as did several of my friends and followers. Two hours later, I got a call from that nice director of patient advocacy who had reached out to me in June. She said she saw I was appeal and she was so glad that I was, and that a whole team of people was going to work on my appeal to expedite it, and she wanted me to know that they were going to work hard on it. I reiterated my frustration that if I divorced my husband, I’d qualify under their income caps, and she said that they certainly don’t want to put anyone through that. I thanked them for expediting my appeal and for reaching out.
But I kept up the tweeting, because clearly it was having an effect. I mentioned that Novartis made $17 BILLION in profits last year. I explained that their drug is $6,000 a month, which is three times our mortgage. I talked about not wanting to divorce the husband I love. I said I wasn’t ready to die.
At 2:30, we sent in my appeal paperwork. And at 3:30, I got the call from Novartis that my appeal had been granted and I was approved to receive Mekinist. I declared victory on Twitter and thanked Novartis for granting me my drugs. It was a fantastic way to start the Thanksgiving weekend.
What have I learned from all this? Well, insurance companies don’t seem to give a shit about horrible things people say about them on social media. They completely ignored everything we tweeted or posted on their Facebook page. But pharma companies DO seem to care about negative publicity. And pointing out the profits they make and the cost of their drugs, and the crazy things that patients have to go through to qualify for support, seems to motivate them to do the right thing.
I plan to use what I’ve learned to help as many patients as I can get access to the drugs they need to keep them alive. If you or someone you know is having trouble getting access to drugs, please contact me. I intend to use my social media platform and my contacts in whatever way I can to help patients get the drugs they need. That includes holding insurance and pharmaceutical companies to account for their actions–for high drug prices, for bureaucratic hassles, for decisions based on profits and not patient lives. In fact, right now my friend Champagne Joy is waging her own campaign to get her combination therapy drugs. Her insurance company, Cigna, which made $2.3 BILLION in profits last year, is refusing to cover her drugs. You can help her out by tweeting about it, using the hashtag #SaveChampagne.
This battle has been won, but there are more battles to be fought, and I won’t stop fighting until all patients can access the drugs that they need.