Click to download the PDF to view the full issue
With billions of dollars of sales lost to nonadherence, the pharma industry has launched its own efforts to help boost adherence; but listen to what these patients say about why pharma is still missing the mark.
The figure is staggering: medication nonadherence costs the pharma industry $564 billion in lost sales each year, according to a study by Cap Gemini and the patient adherence company HealthPrize. Communication with patients, once secondary to communication with physicians, has become the priority with many marketers, as pharma companies realize that better patient adherence would translate to not only a better bottom line, but better health outcomes overall. Yet patients’ overall reaction to pharma’s efforts to communicate and educate ranges between outright hostility at worst to tepid at best. In talking with five activist patients, Med Ad News found many reasons for these attitudes – and as long as patients feel that the industry is not truly listening to them or acknowledging their needs, adherence education efforts will continue to fall flat with them.
Awkward Interactions, Online And Offline
“E-Patient Dave,” Dave de Bronkart, is probably the most famous patient leading the charge towards healthcare empowerment, but he is not the only one. Since starting the Society for Participatory Medicine less than two years ago, de Bronkart has been joined by thousands of patients online, all talking about working with their physicians, other healthcare providers and FDA to improve the healthcare system.
In all of those conversations on e-patients.net, however, there is little about how pharma has reached out to patients, whether on adherence or any other topics. And the patients interviewed for this story expressed general dissatisfaction with the industry’s social media efforts in its attempts to find out what patients really need.
Healthcare activist Regina Holliday, whose husband died of cancer and who cares for a son with autism, does not like it when a company reaches out to her with the intent to use her thoughts to get their own brand messages out. And she is especially annoyed with pharma’s social media efforts.
“You just get angry, because [companies] act like you want to be my friend, you act like you want to bother to learn about me, but then you don’t,” Holliday says. “You don’t learn anything about me and what our needs are. And that makes people angry. And that’s often where social media and pharma have butted heads, because it’s a conversation, and there’s been a problem with realizing that. You actually have to talk as people, one to the other. It’s not marketing, it’s not traditional marketing at all. People are really willing to have truthful conversations, but you actually have to have a conversation.”
Holliday is very aware that there are no real guidelines from FDA for social media, and companies are restricted from saying many things. But there are other things pharma can talk to patients about.
“I know it’s tough, because you can’t recommend, you actually can’t give medical advice, there are laws that are making it tough for pharmaceutical companies to say a whole bunch of stuff, but they can talk as people though,” she says. “They can talk about policy. One of the things they have to do is get their voice out there as people and talk, that’s key. It can’t be just a campaign, it has to be more than that.”
Scott Strange, who has type 1 diabetes, was not impressed by Novo Nordisk’s efforts to market its NovoLog Flexpen in its Race With Insulin campaign. Featuring racecar driver Charlie Kimball, who also has type 1 diabetes, the campaign includes a Twitter account through which Kimball talks about his races and living with the disease. The campaign is known for the pharma industry’s first branded Tweet, in which Kimball talked about taking Levemir FlexPen before a race.
Strange is sharply critical of the Twitter campaign, calling it “a waste of time and a disaster.”
“From my standpoint, I’d see a Tweet from Charlie saying, ‘I just took my Levemir and I have a race today!’” Strange says. “And I’m going, ‘Hey, that’s great, Charlie, I took my insulin today too! Big deal!’ So really, all they were doing, they actually weren’t interacting with people, they were just talking at people, and that’s a very common mistake.”
To Strange, Novo Nordisk is treating Twitter as another marketing avenue, and because of that, the campaign rings falsely with him. But like Holliday, he realizes the pharma industry is operating under some real restrictions with social media.
“I know the FDA is very little help in this, it’s almost like they’re hanging everyone out in the breeze, letting them go until they hit some imaginary line, and then saying, ‘whoah, that’s too far,’” Strange says.
Kelly Young, known as @rawarrior on Twitter and who blogs at RAWarrior.com, says the reason why efforts to communicate with patients – via social media or specific programs for adherence – often fall flat is that there are a significant number of people at companies afraid to talk with patients.
Attending the American College of Rheumatology meeting as a member of the press and as an exhibitor, Young notices that one role of hers – patient – puts fear into some pharma execs. But she is not attending the meeting as a patient, Young says.
“Whether I’m an exhibitor or have a press badge, neither of them says patient on it,” Young says. “And as I move through the exhibitor area and have conversations, some people are very comfortable having conversations but sometimes once a representative of a company recognizes that I’m a patient, they don’t want to talk with me anymore. They’re afraid to talk to me, they think just because I’m a patient, that there’s possibly some violation by having a conversation with me. They’re so afraid. I’ve been told to leave an exhibit when they found out I was a patient.”
This overly cautious attitude towards patients has erupted in other incidents, she says. While discussing a consulting contract with one pharma company, Young mentioned that she’d had an adverse reaction to a pneumonia vaccine, something she had even blogged about.
“They stopped cold and changed the conversation to the pneumonia vaccine – ‘I need to find out what that vaccine was, whether that was our product. It could be an adverse event and I’m supposed to find out about that,’” Young recalled. “I’m like, ‘No!’”
Young says the company she was dealing with does own a pneumonia vaccine, but the vaccine she had a reaction to was not their vaccine. “I didn’t mention their product, that shouldn’t have entered into the conversation,” she says. “It’s just an example of what I think is wrong, that it could seem complicated, but it doesn’t need to be complicated.”
Part of the problem is due to FDA’s reluctance to share any social media guidelines, Young believes.
“I don’t think the FDA is doing us any favors by not saying anything,” she says. “And I don’t think there are guidelines that could cover every single circumstances. People are so worried about the FDA that they’re oddly hypervigilant about customer discussions. I knew in that circumstance, he didn’t necessarily have to respond that way. I have other friends that work for the same company that knew about the pneumonia vaccine reaction on my blog.”
This overly cautious attitude makes it very difficult for the industry to effectively communicate with patients, Young says. “Whether it’s adherence programs or marketing or research or anything, it’s very difficult to build and move forward with patient involvement with pharma,” she says.
Holliday says when it comes to social media, pharma has generally become more scared.
“I entered this space four years ago, and a lot of things hadn’t been decided four years ago,” she says. “And it seemed there were more people Tweeting back then or trying to talk back then, then there are now. Legal smacked down on so many people, but there are still things you can talk about. People became so frightened about screwing up, they stopped talking, period. They deleted accounts, they just disappeared. That’s not the way to go, that’s the ostrich method.”
According to Holliday, executives who refuse to participate in social media, not because their companies actively restrict them from doing so but because of fear, are actually harming their companies in the long run. “They’re not playing on the field, they’re not being part of the conversation in this new world that is here and becoming more real every day, they’re being left behind,” she says. “Your job is going to go away! The world has changed, and the traditional forms are going away.
“Now, medicine is a little bit behind the times, they have a lower adoption rate than other fields, but my goodness, the conversations being had in social media are so incredibly important, and oftentimes months ahead of what’s going on in traditional media, that you’re getting left behind,” she says. “You have to jump on board as soon as you can if you’re going to stay in any kind of field that is about advocating or promoting a thing or a cause. … So you’re missing where people are actually at, they’re on Facebook, they’re on Twitter, they’re communicating through these mediums, that’s where they’re spending most of their time. People are leaving television behind, they’re leaving traditional print media behind, they’re spending all of their time in these real-time media. And if you’re not part of that conversation, we forget about you.”
Are You Listening?
Patient activist and breast cancer survivor Casey Quinlan is not afraid to say exactly what she thinks about pharma’s efforts to communicate and to promote adherence.
“I believe that the pharma industry needs to wake up and realize that adherence in a population health model is going to be a dead dinosaur in the next decade,” Quinlan says. “This ‘Yeah, we have a blockbuster drug that works sort of OK in 60 percent of the population and doesn’t do squat for the other 40 percent’ – really? Is there a reason why people get prescribed a blood thinner or statin and it’s not an SOP drill to give them the CYP genomic testing to figure out if it is even going to work for them, or if it’s even the right dosage or the right medication for them? When there is genomic testing available that will tell you if 60 or 70 percent of the drugs that are most commonly prescribed will even work in this human that’s standing in front of you, why is that not standard?”
Part of the adherence issue stems from how every party in the healthcare system is not used to listening to patients.
“Everybody’s getting in their own way, but it would be a better system if all parts of the transaction had a better understanding of what was possible and what their responsibility was in delivering information,” Quinlan says. “Patients need to be honest too. But the power balance has been skewed for so long. Patients have been assigned the meat puppet position, but now that we’re waking up and saying, ‘Hey, wait a minute,’ everyone’s getting confused by the fact that we’re opening up our mouths and speaking.”
Holliday has also noted the general tendency to not listen to patients.
“One of the major problems, why there is so much ambivalence, is that a lot of patients feel we’re not getting to the root of the problem, we’re just treating symptoms,” she says.
Another adherence problem stems from a medication not being a good fit for a person – not just side effects, but lifestyle reasons.
“With my son, he has all sorts of issues with pill-form medication, he can’t stand taking a pill,” Holliday says. “But there’s a tendency to want to prescribe pills for him. He really needs liquids, but liquid medicine isn’t accessible, that’s part of the problem too. … you’ve got to modify the regimen to match the child. But when you smack into the world of medicine, there’s very little understanding.”
Young says she dislikes what kinds of assumptions are made about why patients are not adherent, when there are good, logical reasons such as side effects.
“When you listen to patients, you can find out why they make decisions,” she says. “Patients are just people who had to use medical care, they may not want to use medical care, but they do. Even chronic patients, people with long-term diseases, there are probably some patients – just like some of any group of people – who maybe have a low education or who have anxiety or some kind of psychological problem that would interfere with adherence. But I wouldn’t assume just because patients are nonadherent that they’re not intelligent or they have emotional problems or they don’t have good reasons for making decisions.
“And it seems to me suddenly, when you become a patient, there’s some kind of labeling that suddenly you’re not bright enough to make decisions or be a part of making these decisions. Or the reasons you make these decisions is something that’s subversive and is not a good reason. It’s really strange, and you couldn’t talk about any race of people or any country, any nationality the way that you read how people talk about patients, there’s something about us, we’re not logical, we’re not engaged.”
Carla Berg, who is taking medication for a chronic thyroid condition, says she wants the pharma industry to provide good information so that she can check out what her doctor prescribes for her.
“I find that often frankly, my doctor refers to the first thing on her list, and I decided I don’t want to take it, because I don’t like the risk profile or something,” she says. “And since we’re talking about discretionary choices, it’s not something like insulin that I absolutely have to have, I have the latitude to satisfy myself about the risk/benefit profile from my point of view. Anything that pharma can do to help me figure that out, the evidence-based links that show me what the outcome studies have been done around this particular med, anything that helps me see what patients have reported about their experiences with this drug. You see that ton of fine print in every magazine ad, every newspaper too, but what you never get in any of that is a sense of proportion. Gee, it might kill me, but how many people does it kill? That proportionality would be nice to get.”
Berg also says the industry needs to attend to its image if it wants patients to take seriously the information being offered. “The more things it does to help patients feel that patient welfare matters at least as much as profit to them is reassuring too,” she says. “How you do that, I don’t know, but I think that when people get skeptical, that’s often what it’s about.”
Quinlan says DTC advertising helps fuel distrust of the industry.
“If they were a little less willing to glitz up and advertise the bleep out of everything, I would feel a little more trusting,” she says. “But I feel as though I’m being handed a Madison Avenue game card – check off all the boxes, ask your doctor about all of our stuff.
“Pharma blames the FDA, and it’s not like FDA doesn’t deserve to get a 5-iron upside the forehead, because they’re not really helping the industry or patients see an accelerated path to better health, using pharmacology,” Quinlan says. “However, given that the industry itself has shown very little willingness to admit that they’re not all about the benjamins, you either want to make a billion dollars and give all the money to your shareholders, and have a shareholders party, or make it much better for people to take your drugs. You have to pick one. … There’s lipservice paid to all the patients we’ve helped … the scientists are doing great stuff and I love that, but when it really comes down to it, the business decisions made by the industry are made solely on the profit motive and shareholder value. They are not based on human lives.”
The Glimmers Of Hope
Although most companies as a whole and many executives are not seen as good listeners and communicators with patients, some get praise.
Strange and Holliday singled out Lilly Clinical Innovation Team, or Lilly COI, for the team’s efforts in reaching out to patients. The Lilly COI team keeps an active presence on Twitter, conversing with patients and letting followers know what is going on at the conferences they attend.
Strange had attended a conference where he had met with Lilly COI team members about improving drug development. “I really like them,” Strange says. “That was a very good meeting that left a good impression, because they were very active listeners, you knew that they were paying attention to what you were saying simply because of the way that they were sitting there and looking at you. You could see the thoughts turning in their head as they were getting a different perception.”
Holliday also singles out Craig Lipset, head of clinical innovation at Pfizer, for having “an amazing social media presence.”
“He talks that way, all the time, he never varies from it, and everyone knows he works for Pfizer,” she says. “There are way too many people within hospitals and pharmaceutical companies who are too scared to communicate honestly as the person they are, because they’re so scared they’re going to put their foot in their mouth, that they’re going to say something wrong. So they say nothing at all, and I’ve got to tell you, saying nothing at all is way, way worse than saying something wrong. Because wrong you can come back from, wrong you can make a huge story and a triumph out of – nothing goes nowhere.”