Recently, I had what I consider to be my first real advocacy experience beyond sharing my personal story and experiences with cancer. It’s an important issue that merits sharing, so here’s the scoop.

Over the past few weeks, there has been a serious amount of confusion and concern in the MBC community over the coverage of a drug called Herceptin by the insurance company Humana.

Herceptin has been a miracle drug for many, many people since its FDA approval to treat metastatic breast cancer in 1998. It is listed on the World Health Organization’s list of Essential Medicines. Herceptin is only indicated for those cancers that over-express a protein called human epidermal growth factor receptor 2, or HER2 (ie, cancers that are HER2+).

There is currently no substitute for Herceptin. No generic, no other option. A biosimilar drug, Ogivri, has been developed and received FDA approval in Dec of 2017, but it won’t be available until 2019, so that’s not helpful right now.

According to the Mayo Clinic, about 1 in 5 breast cancers are HER2+. HER2+ cancers tend to be more aggressive, which is scary, BUT being HER2+ now opens up more treatment possibilities, so it’s a double-edged sword. There are a few extremely powerful biotherapies available that target the HER2 receptor – including Herceptin.

I am strongly HER2+ (100%, to be exact), and am personally dependent on Herceptin. It has been a somewhat miracle drug for me. I took it for a year in 2011 during my early stage treatment, and I have been on it consistently since Oct of 2014. Every 3 weeks I go in for my IV Herceptin infusion (along with Perjeta), and it keeps me stable. By that I mean that it keeps the cancer at bay, which is HUGE.

I am not alone here. Many, many MBC patients depend on Herceptin in order to survive. In fact, many early stage breast cancer patients depend on Herceptin as well.

Like most other oncology drugs, Herceptin is crazy expensive. On my personal explanation of benefits (I don’t have Humana), each one of my every 3 week infusions costs around $15k. According to Cure Today, in 2016 the annual cost of Herceptin without insurance was $64k.

So. A few weeks ago (I’m not sure exactly when it started), I started seeing floods of borderline panic on social media from the MBC community about Humana potentially no longer covering Herceptin as a preferred drug, which would result in astronomical co-pays. As a non-preferred drug, patients would be responsible for a 20% co-pay of each infusion. That works out to be about $3k, every 3 weeks, if you work from my explanation of benefits. That is nuts, and cost-prohibitive for many people, if not most. It seemed like no one knew exactly what was going on, which only contributed to the panic. People were scared that they would no longer be able to afford their life-saving medication, or be forced into serious financial hardship simply to survive. Neither is acceptable.

The other source of major concern was whether or not this change would set a precedent for other companies and other oncology drugs. That’s a super scary idea.

The story got some press, but it still didn’t seem clear what was happening, and the concern that patients would be left in the lurch without their meds remained.

At this point, I reached out to Patients for Affordable Drugs, which is an amazing non-profit that I have had the great pleasure of being involved with as a Patient Advisor. P4AD works to lower the prices of pharmaceutical drugs (across the board, not just for cancer therapies). As they say, “drugs don’t work if people can’t afford them.” Amazingly, the president and founder of P4AD, David Mitchell, offered to try to help us sort this out.

We started by writing a letter to the CEO of Humana asking for clarification and an explanation as to what specific changes they have made, why, and what they plan to do for patients who simply cannot afford the new 20% co-pay. We sent the letter off, and waited. A few days later, we received a response and an offer for a meeting with Humana to discuss the issue. David went to the meeting in person (it was in DC), and I called in by phone.

The Humana folks listened to my concerns as I described the fears and confusion circulating around the MBC community, and I have to say – I didn’t hold back, and they really did listen and hear me. They then explained the new policy and answered all of our questions. In the end, they actually asked for feedback about how this could have been handled better on their end – which I think we all agree largely comes down to better communication – and they agreed to work on better informing their clients about changes to their policies.

We didn’t come out of the meeting with Herceptin being covered as a preferred drug at $0 co-pay, which of course would have been the ultimate success. But we were heard, we got answers, and I believe we will be seeing some kind of press release soon from Humana to clear up the situation. I don’t believe that advocacy work always happens in big, giant size, mega successful steps. It’s a series of small steps, small changes, emails, meetings, and conversations that often take a lot of effort and energy and don’t look like much at the time, but actually add up to something bigger. This meeting was one step, and it was a good one. It’s a step in the right direction. I’m proud of myself for seeing a problem and taking action. That’s advocacy, right? Well, let’s say that’s my style of advocacy. There are many out there, and many are worthwhile – this is just mine.

I’m also extremely grateful to David and P4AD, as this meeting would never have taken place without him. And, while some will not want to hear this, I am actually grateful that Humana took the time to speak with us, hear us, and have such a candid conversation.

With that said, here is all the technical insurance information that we learned during the meeting, for anyone who is affected by this or interested in learning more.

Herceptin is still covered by Humana under commercial and Medicare plans. Up until 2018, everywhere in the US EXCEPT for south Florida paid a 20% copay for Herceptin (ie, it was a non-preferred drug everywhere except for south Florida up until 2018). South Florida had been paying $0 (it was preferred in that specific market). As of 2018, Humana aligned south Florida with their coverage in the rest of the country, so everyone now has a 20% copay, because it is non-preferred EVERYWHERE now – up until the max out of pocket, which for the vast majority of their clients is $3400 (but could be up to $6700 depending on the plan). No one pays more than $6700 per year. Humana stated that they did provide an annual notice of change/evidence of coverage to their clients that talked about these changes, but readily admitted that those documents are hard to understand for most people and that they can improve their communication. They assured us that this change to Herceptin in South Florida is not predictive of any future changes to any other drugs, in any other markets.

So now we wait to see if Humana comes out with any kind of statement to address the issue.

I know that some won’t be happy with this outcome, and some won’t be happy with me or with this post. I’ve already been told by some that I didn’t do enough or didn’t approach this correctly, in their opinion. I hear that what everyone really wants is for Herceptin to be covered as a preferred drug. I want that too. I don’t blame anyone for wanting more than a conversation. But this is where we are at right now. Small steps, meetings, conversations – it all adds up. We keep on keeping on, we show gratitude for those who help, we keep our larger goal in mind, but prepare ourselves to take on lots of small, hard steps – and at some point, we’ll see the change.