Patient Communities Special Feature: Patient influence continues to rise

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The growth of communities such as Inspire and PatientsLikeMe, coupled with FDA’s recent guidance on social media in pharma, point to how patients will increasingly merit pharma’s attention.

When the patient community network Inspire was founded eight years ago, co-founder and CEO Brian Loew said he got a cool reception from the pharmaceutical companies he met with to talk about how patient insight could help shape the development of medicine.

“There was definitely the feeling we were too early,” he says. “They still felt that the physician was the center of the universe and the doctor made most of the decisions, and what was the point of talking with patients. I don’t mean that everyone felt that way, there was certainly always a patient advocacy group within pharma, but it seemed like brand teams and R&D were very much focused on the physician as the center.”

Now Inspire has more than 600,000 patients in its networks, growing 30 percent from last year, and provides the platform for online patient communities for groups such as the National Psoriasis Foundation. And in April, the patient network PatientsLikeMe entered a five-year agreement with AstraZeneca, in which AstraZeneca gets access to PatientsLikeMe’s global network in support of the company’s patient-driven research initiatives.

With the growth of patient communities, the ACA and increasing insurance costs spurring more patients to become concerned about the cost of their medications, and FDA’s guidance on social media giving pharma legal departments a framework to work within, expect that pharma’s interactions with patients and patient communities will continue to grow.

The Inspire view

Loew has noticed pharma’s changing view of interaction with patients.

“We started the company with this very idealistic notion, that with the patients at the center, the patients can contribute to the advancement of medicine,” he says. “Thankfully in the past few years, I feel like it’s finally happening, in the sense that pharma is behaving differently now. Now there’s real interest in connecting with patients.”

Inspire works with pharmaceutical companies such as Merck, Pfizer, and Novartis to share their messages with patients. Inspire e-mails the messages, and members can opt to accept these messages or refuse them. The overall opt-in rate, to choose to receive messages from Inspire, is about 90 percent, though for individual campaigns it is usually about 25 percent.

“Typically what we do is asking the patient to participate in research, either clinical trials, or market research, or we’re helping to educate them about brands from a pharma on the brand side,” Loew says.

He believes that the social media revolution has been the main driver in pharma’s changing mindset about patients.

“There is some general awareness that patients are reading and writing and talking and that they are in fact influencers,” Loew told Med Ad News. “I think that’s the other thing, we have given a voice to patients, and they in turn give a voice to other patients. If you take a drug, and you say great or terrible things about it, may read it, and talk with you about, and that might not be true 20 years ago.”

Loew believes another factor shaping pharma’s willingness to listen to patients is patients’ concerns about cost.

“I think patients are affecting the ways dollars are being spent, in a way that they didn’t use to,” Loew says. “Patients are able to make decisions about what drugs they are going to take. And that wasn’t true for the most part years ago. Years ago, the drug you took was primarily determined by your doctor, and even now in cases now where that is primarily or heavily true there are plenty of cases where the patient has a big amount of influence on what drug that they take.”

Loew points to the psoriasis therapeutic category as an example. “Psoriasis is one category where the dermatologist is willing to entertain preferences expressed by patients, because they can do so without extreme risk,” he says. “If a patient comes and says, ‘I’m interested in trying this drug,’ or, ‘I don’t want to try that drug,’ they can influence where a lot of money is spent. It’s my suspicion, it’s only a hypothesis, but I think that’s played a role.”

Inspire recently conducted a survey with its members about insurance and the cost of treatment. Sixty-five percent of the more than 10,000 respondents said they had commercial insurance, with 51 percent saying they had difficulties with affording the cost of treatment.

Sixty percent reported that their insurance premiums had increased; 48% said their co-pays had increased; 40 percent said their ancillary treatment costs had increased.

To top that off, 64 percent reported an insurance-driven switch to generics for their medications.

“Our sense is that there’s been a huge change in affordability and that the way that money is spent, and the patients necessarily, are by necessity are involved in different decisions based on cost, perhaps more than they used to be,” Loew says. “Some of these drugs are quite expensive and patients are absolutely making decisions about all sorts of things based on how much it’s going to cost them. And that’s definitely different than it used to be.”

Coupled with this concern about costs is the trend, particularly in rare diseases and even in some chronic conditions such as psoriasis, of the use of expensive biologics in treatment.

“So you take that first trend and combine it with the fact that some of the drugs are quite expensive, and now there’s a lot of concern among patients about what kind of insurance plan they have and what it covers,” Loew says. “And I think that pharma companies recognize that that matters.

Frequently, Loew hears from pharma companies that even in cases where they have patient assistance programs, many times patients don’t know about those programs. “And that’s frustrating to pharma,” Loew remarks.

As far as pharma has come with patients, the industry still can come farther, Loew says. “Patients are willing to help accelerate research, but they often don’t know how, so pharma could do a better job perhaps of creating ways for patients to get involved in research or learn about brands than they do today, by putting themselves in the mindset of the patients – treating patients as interested, intelligent participants in their own health,” Loew comments.

According to Inspire member and thyroid cancer survivor Aleka Leighton, while she was able to easily register to receive coupons for Synthroid, there has been no real interaction with AbbVie or any of the other companies producing her medications.

“Not really any communication, you put in your name, you get the coupons, sometimes they send you reminders that you have to refill your prescription, but it’s not like they’re interested in anything about you,” Leighton says. “It’s really just this is how you get your coupons, this is how you get your discount, this is the way you take your medicine.”

Leighton notes that when she registered for the discounts, AbbVie didn’t include “thyroid cancer” as one of the reasons why a patient would be taking Synthroid.

“They always ask you about hypothyroidism or hyperthyroidism, but never ask you if you have cancer,” she says. “I think because they have the monopoly on Synthroid, they don’t care, they know you are going to be taking it.”

And none of her endocrinologists trust cheaper generic alternatives. “I have a new endocrinologist,” Leighton notes. “He doesn’t want the generic because he doesn’t think it’s the same medicine.”

Though AbbVie readily provides discounts on Synthroid, Leighton could not get any discounts on the injectable medication Thyrogen, from Genzyme, a Sanofi company. Though Genzyme has a patient assistance program for Thyrogen, Leighton was told she did not qualify because she had health insurance – yet her insurance was at the time refusing to pay for the medicine, which was $6,000 an injection and two injections are needed in the course of treatment.

For some of her medications, such as her cholesterol drug, Leighton uses generics, which her insurance company does pay for. And when it comes to messages about her health, Leighton says she has far more interaction with her insurance company than any pharmaceutical company.

Partnering with patient groups

Inspire’s patient communities are partnerships with organizations such as the Arthritis Foundation, the Ovarian Cancer National Alliance, and the National Psoriasis Foundation. According to Catie Coman, VP of marketing and communications at the National Psoriasis Foundation, before partnering with Inspire the group had run its patient community itself.

“We are not a tech company so we were spending a lot of time fixing the platform and finding long-term moderators and doing long-term maintenance stuff and it was taking us away from our mission-critical activities,” Coman says. “Our online community is really important to our patient community and we felt that we weren’t able to provide them with the best experience because we aren’t a tech company. If the site went down over the weekend, it would sometimes take us several hours to get it back up, because we had to find someone.”

Additionally, the platform NPS was using at the time did not allow the organization to offer expanded social media functionality.

“Inspire works closely with us, essentially it’s our community partnered with Inspire,” Coman says. “They have on-staff moderators, and we give the moderators the parameters we feel need to be expressed. We work them on the business development side of things. The community, we truly share the community, that was important to us when we moved over. And it’s been successful. They’re also constantly iterating on the site so we’re not stuck on one platform.”

NPS partners independently with pharma companies through its patient community, Coman says. The companies can sponsor content, sending out messages through daily or weekly e-blasts of custom content and other custom activities.

According to Coman, it is difficult to criticize the pharma industry for not communicating effectively with patients because of the restrictions companies operate under.

“They way we communicate – and that’s one of the reasons why the companies partner with us – the way we can communicate with the patients is different than the way they can communicate with the patients, and the way that patients can communicate with each other is different than the way we can communicate with patients,” she says. “That’s sort of the spectrum of the communications spectrum using Inspire, with patients able to communicate with other patients. So it’s really tough to say I would do it differently, but I don’t have all of these regulators, FTC and FDA, all of these constraints on communication.”

Coman points to two campaigns by companies in the psoriasis therapeutic area that shows they are trying to reach out. AbbVie’s “Double Whammy” campaign for Humira highlighted the tandem conditions of psoriasis and psoriatic arthritis. Another campaign that made an effort to reach out to patients was Novartis’ “Pso Me,” whose website allows patients to share their experiences with psoriasis (for more insight about this campaign, see the Q&A with Novartis’ Cathryn Clary, M.D.).

Beyond the online community, the National Psoriasis Foundation and other patient advocacy organizations can act as a conduit to bring real-life patient expertise and perspective to pharma companies.

“We bring patients into pharma companies, at the companies’ request, so that they can tell their story, they sit in focus groups so they can tell what it’s like to live with psoriatic disease, and more and more, the companies are asking for patients to come in and talk, and they want to act with patients in an official way,” Coman states. “And the patients really like it. They feel like the company is listening to them … Nobody tells the story of what it’s like to have psoriasis or psoriatic arthritis than the person who is living it.”

Patient and patient group, in one

As this issue went to press, Katherine Wilemon was preparing to testify in front of an FDA advisory committee as it reviews two PCSK9 inhibitors, alirocumab, from Sanofi and Regeneron, and evolocumab from Amgen Inc.

Wilemon is not only a patient who has been living with a severe form of familial hypercholesterolemia – she had a massive heart attack at only 38 – she is the founder of The Familial Hypercholesterolemia Foundation. The FH Foundation is technically not a patient group, “even though we are patient-centric,” Wilemon says. “We’re a research advocacy organization.”

“My own journey with FH pointed out that it’s a vastly underdiagnosed condition,” Wilemon says. “Even after my heart attack at age 38 with an LDL cholesterol above 500, I was still not being taken seriously in terms of being at such high risk for progressed heart disease.”

Wilemon had fought heart disease her entire life, and after the
heart attack, it took her two more years to find a specialist who adequately understood what she had. “Certainly my story is unique to me, but what I did find was that 99 percent of individuals with FH are undiagnosed in the U.S., in Japan, in most countries outside of northern Europe,” she says. “This condition is being under-recognized and undertreated, and that’s what led me to this work.”

At the hearing, Wilemon is advocating for more treatments for FH rather than on the behalf of any pharmaceutical company. “Even after diagnosis, we do not have enough excellent therapies to adequately address our condition,” she says. “There are therapies to adequately address the condition and prevent heart disease, but we need more to prolong our lives.”

It took some effort for her and the FH Foundation to build a relationship with pharma companies doing research in this area, Wilemon notes. “We had to gain their respect in terms of our ability to execute,” she says. “One of things we did to do that was have a model of partnering with key opinion leaders nationally and internationally.”

Even with the backing of respected key opinion leaders, it took time for the foundation to build a relationship of respect with pharma companies. “There have been bumps in the road where we’ve had to say, ‘That’s your agenda, this is our agenda, and we can only work to serve our community and integrate and enhance the knowledge of the condition,’” she says. “It took direct communication, respect of each other’s autonomy and where we have similar goals and where our goals diverge, and being very honest with each other about that.”

Wilemon agrees that pharma companies are making an effort to be more respectful about the value and perspective advocacy organizations such as the FH Foundation bring.

“I have only been doing this work for five years and the FH Organization is only three and a half years old, so I don’t have the long history that some of the other advocacy organizations have,” she says. “But I certainly see them trying. I think they are very interested in collaborating, and you can see it’s been challenging for them because they believe they have all the expertise. But in general, pharmaceutical companies that we interact with are respectful and appreciate our unique role in the ecosystem.”

When Wilemon began speaking about her experiences with FH, it was Genzyme who assisted her, after she was introduced to the company by a physician contact.

“Genzyme actually did help make it possible for me to meet the right people and to go arrange some of the opportunities for me to speak,” she comments. “I was never paid, I was doing it on my own, but they were a facilitator of my getting into this work… Even from the beginning, the pharmaceutical organizations are the ones who have a lot of perspective that they can bring to someone who wants to advocate for a condition.”


Q&A with Cathryn Clary

Med Ad News talked with Novartis’ Cathryn Clary, M.D., head of U.S. Medical and chief scientific officer, U.S. General Medicines, Novartis Pharmaceuticals Corp., about how the company is directly working with patients to improve the Novartis’ R&D endeavors.

MAN: How have you seen Novartis evolve its relationship with patients? What are the programs you would point to right now that show how the company has worked with patient activists?

Clary: We at Novartis recognize that the engagement of patients across our organization is absolutely critical to our strategy of bringing the right medicine, to the right patient, at the right time. For us this means moving beyond patient centricity to patient inclusion, and beyond our commitment ‘for’ the patient to working ‘with’ the patient: side by side.
Engaging patients from early in development through when treatments are on the market helps ensure that we deeply understand their journey and daily struggles and develop treatments and services to meet their needs.
We use multiple approaches to bring patients in – whether it’s by using technology for a more patient-friendly experience, seeking their input on patient education programs, and by supporting patients through their treatment regimen. A few examples include:

• We recently included a patient on a Steering Committee who is providing valuable input as we design and implement this study.

• We also work closely with patient bloggers, listening to their perspectives and sharing information and resources. This gives us a better understanding of the needs of patients with specific diseases.

• We actively collaborate with a wide variety of patient- and disease-awareness groups. For example, we’ve partnered with the Asthma and Allergy Foundation of America to launch a campaign called “CIU&YOU.” The program is designed to bring much-needed awareness to chronic idiopathic urticaria (CIU), a form of chronic hives with no known cause, and to help people suffering from this condition understand it, define and monitor their symptoms, and communicate their needs and concerns with their doctors. Since its launch,, the campaign’s companion website, has had close to 30,000 visits and almost 3,000 downloads of resources such as a symptom tracker and a healthcare provider conversation starter.

MAN: How do you believe Novartis, and the pharma industry in general, can improve its communication with patients? What areas do you perceive need to be improved?
Clary: The best way to improve communications is by actively and empathetically listening. Understanding a patient’s journey is critical to our ability to develop solutions that truly meet their needs. We are always looking for new ways we can engage with patients – whether it be by asking for insights on how to better design clinical trials to improve the patient experience or getting their feedback on the tools and resources we offer around products that have been brought to market.

MAN: As a person who probably hears some criticism of the industry from family, friends, and even strangers, how do you respond? How do you show that companies are listening to patients and trying to meet their needs?

Clary: At Novartis, we actively engage patients starting in the development process and continuing through when a product is in on the market. For example, when developing our psoriasis treatment Cosentyx, we listened to what psoriasis patients had to say before bringing the medicine to market.
This simple exercise allowed us to gain key insights into these patients’ needs and impacted our strategy for supporting them. We had learned from the psoriasis community that they were not feeling heard or recognized, and that there was a tendency for non-sufferers to trivialize the impact of psoriasis. With that in mind, we launched the “More to Psoriasis” website, which provides a platform for psoriasis sufferers to have their voices heard by posting their personal stories, which can also be shared through social media such as Facebook, Twitter or Pinterest.
We also learned that patients don’t like injections and it can interfere with compliance, so we developed the Cosentyx Sensoready Pen, which is an auto-injector device for patients.
Another big insight was the fact that people living with psoriasis want to be treated like regular people, not patients. That was the genesis for a more personal touch and dedicated service, “Cosentyx Connect.” This support program includes a dedicated liaison that remains a consistent point-of-contact for a given person, providing them with individualized support and guidance.

MAN: The FDA finally issued social media guidelines for the pharmaceutical industry; how did you see Novartis respond to that ruling?
Clary: At Novartis, we recognize that social media offers valuable opportunities to engage with our stakeholders, and we welcomed guidance from the FDA on how to do so responsibly and effectively.

MAN: Are you providing input into any of the company’s social media programs?

Clary: Our medical team is very involved in providing input into Novartis social media programs. The team provides advice and guidance to ensure that our social media resources deliver clear and impactful messages to patients.

MAN: Do you believe these programs improve the dialog between companies and patients?

Clary: In today’s digital world, patients are connected, informed and more engaged than ever before in their own health care. We see them mobilizing each other through social media, using channels such as Facebook and PatientsLikeMe to share information and support. I think that by meeting patients where they are – online – dialogue between the healthcare industry and the patients we serve will only continue to increase.

MAN: Can improved communication between companies and patients improve pharma development programs?

Clary: I believe that engaging patients during the drug development stage is very important.
Understanding patients’ needs when building study protocols that take into account their experience within a study, such as how they will get to a clinical visit, what time of day works best, and can we even collect data without them having to come into a site, can make a big difference in their lives. This can also impact how quickly we are able to recruit patients into our studies, thereby shortening the drug development time.

MAN: How has improved communication between patients and Novartis improved the company’s development programs?

Clary: We are looking at opportunities to bring patient perspectives into early stages of drug development, including getting their feedback on how we design clinical trials. Patients can offer tremendous insights into how to best assess their health conditions, and how to measure the impact of a new medication to ensure our therapies produce truly meaningful outcomes.