How Patient Advocacy Groups can Boost Patient Compliance

Andrew Tolve reports on the role of patient advocacy groups in helping pharma firms improve adherence rates.



Andrew Tolve reports on the role of patient advocacy groups in helping pharma firms improve adherence rates.



The fact that patients regularly divert from medication plansstop prescriptions early, take more or fewer pills than scheduled, or forget their medicines some days and remember them othersjeopardizes public health and costs the pharmaceutical industry millions in lost revenue every year.


The past few years have seen the arrival of novel solutions in the form of cell phone programs, online incentives, and computerized pillboxes. But Dr. Rosalind Kalb, vice president of the Professional Resource Center at the National Multiple Sclerosis (MS) Society, maintains that the key to improving adherence continues to be education and support.


Education and support are the cornerstones to patient adherence, says Kalb. We have to explain whats going on with their disease, why its important to start and finish a treatment, and then help them with any challenges they encounter along the way.


The Challenge of Chronic Diseases


Chronic diseases like MS have some of the most alarming rates of poor patient adherence. Several recent studies have found that as many as 50 percent of patients with chronic diseases divert from treatment plans.


Its a challenge for any patient with a chronic disease, whether its an MS patient, a diabetes patient, or a Parkinsons patient, Kalb says. Knowing that youre going to be doing something for the rest of your life is daunting.


Not only are chronic disease treatments lifelong commitments, they dont eliminate the diseases; they just limit future disability or damage. And when deleterious side effects from the treatments start to outweigh the ambiguous sense of long-term gain, patients often start to struggle with treatment.


Most people who discontinue discontinue because they didnt understand the goal of treatment to begin with, says Kalb. If you expect [treatment] to stop MS in its tracks, youre setting yourself up for disappointment, and youre likely to stop because those things dont happen.


Education and Support


Thus its essential, according to Kalb, to ensure patients understand why theyre starting a treatment, to manage their expectations once theyre in treatment, and to give them constant support. Patient advocacy groups like the National MS Society, she adds, can play a big part.


One role patient advocacy groups can fulfill is to create better educational materials that clearly delineate the steps and goals of treatment and elucidate the nature of the disease.


For example, one of the most influential factors in the success or failure of MS treatment is the support partnerthe spouse, friend, or caregiver, who among other things helps administer shots. Support partners regularly complain of not feeling involved enough in the treatment plan and of being ill equipped with information about the disease. Therefore, Kalb, its important that educational materials cater to support partners as well, and encourage physicians to bring them fully into the fold.


A second role patient advocacy groups can play, and perhaps their primary role, is to listen to patients and direct them to appropriate support. Were in the business to make sure people are connected with the resources they need to be successful, Kalb says. Our resource center fields tens of thousands of calls a year.


Resource center staff answer questions about side effects, direct patients back to appropriate health care professionals and pharmaceutical companies, as well as to MS Centers, where theyll have a host of support partnersdoctors, nurses, attendantsto help them fulfill a challenging regimen and ensure they adhere to it. Kalb says that patients at MS Centers are often more successful than those seeing lone practitioners.


Patient Support Programs


Pharmaceutical firms also have a significant role to play, says Kalb. Most pharmaceuticals in the MS space have established patient support programs with nurses at the ready to help patients in need. But Kalb says that many patients at the National MS Society rave of pharma support, while others complain about how ineffective or flawed it is.


Pharma patient support programs, in other words, have consistency problems, and while cell phone programs and online incentive schemes may work wonders, when patients need a real voice or a real person, those support programs need to be in place and reliable. I think they need to make sure when they have those programs that the nurses are truly available and responsive to the issues people are having, says Kalb.


Financial Support Programs


Another role for pharma is financial clarification. MS treatment, like so many medicines and treatments these days, is expensive, and financial hardship remains the biggest single deterrent to patient adherence.


While many pharma companies have financial support mechanisms in place, patients often dont know about them. Additionally, many patients are confused and/or angry about why treatments are so expensive to begin with. The prices go up astronomically each year, says Kalb, and people simply dont understand what it costs to develop medications like these. So not only do pharmaceuticals have to explain it better, they also need to do something to curb these costs if we truly want adherence to improve.


Above all else, Kalb says, teamwork is critical. Its not enough for us to get a patient started on treatment, whether its a financial issue for pharma or a health issue for the doctor or an advocacy issue for us, its just the first step. It means weve conveyed the importance of getting early treatment. But we need to be there six months down the road when the person says, God, I cannot do this again. I cannot put that needle in myself again. Or, I just lost my job and I cant afford to do this treatment in place of losing my house. Or, a year down the road, when they hit a bad MS relapse. In all of these cases how do we collectively deliver the support they need to get them working with their doctor to decide if its time to switch to another medication or whats really going, so they dont just give up.