A Patient's Voice Is Like No Other

Imagine living with a chronic illness, a disease or disorder that is never going to be cured and yet affects your everyday life. That is how it is to be one of the 4 million Americans who have Sjögren’s syndrome. People with Sjögren’s syndrome are among the 133 million Americans living with chronic diseases and disabilities—all of whom face similar yet unique challenges. They treat their various symptoms without ever curbing the entire disease. Their lives are altered and challenged.

Richard Cohen, a lead expert on a National Health Council/WebMD community for chronically ill patients called A Patient Voice, best described the frustration of individuals with chronic conditions when he wrote, “The system is set up to handle sick people who get better or die. Lines are pretty clear. The problem here is that none of us gets better and only some of us die. So we find ourselves functioning as square pegs trying to wedge ourselves into round holes. Often it is not a good fit, and we don’t get much help pushing.”¹

As an author and public speaker, Mr Cohen knows all too well about the struggles of patients. He was diagnosed with multiple sclerosis and regularly hears stories about patients struggling to be treated as individuals rather than a homogenous group. They are individuals with a disease or disorder and not one and the same with otherpatients who suffer from the same disease. If you talk to chronically ill patients, you will find that diseases affect them in different ways, thus calling for individualized treatment plans. That is why thinking of these patients as a homogenous group is wrong.

How should the pharmacy benefits industry respond? How can we start to change this mindset of looking at chronically ill patients as a homogenous group?

First, policy and decision makers need to start listening to patients. I believe that patients’ voices need to be heard in all decisions that affect their health, from legislation to insurance changes to clinical practice guidelines. As was stated by the National Health Council, the only organization that speaks with a united voice for Americans with a chronic disease or disability: “Patients are their own experts. One cannot underestimate the knowledge that informed patients have about their conditions.”

In a statement before the US Food and Drug Administration on the Prescription Drug User Fee Act reauthorization, the National Health Council said that “there’s no one better informed than a patient who has been diagnosed with a serious, life-threatening disease or disability.” I agree. What better spokesperson for how a system is working or should work than someone who partakes of the system on a regular basis? For example, Sjögren’s patients see their rheumatologist an average of 3.4 times a year and use between 6 and 12 products on a daily basis to treat their disease. People who live with the reality of a chronic illness can share fi rsthand how a policy decision or the implementation of a new protocol may affect their daily lives.

Second, partnering with credible voluntary health agencies (also known as patient advocacy organizations) to learn more about chronic diseases and disabilities will provide resources helpful for the decision-making process. The only national voluntary health agency for Sjögren’s patients, the Sjögren’s Syndrome Foundation, has connections with thousands of willing patients and healthcare providers who will share their expertise with any organization or government entity that is considering making changes that would affect the lives of these patients. I know that the Sjögren’s Syndrome Foundation is not alone in this willingness to work alongsidepolicy and decision makers to lend its resources and expertise to help find meaningful ways to curb costs and increase efficiency in their system without making patients suffer. The member organizations of the National Health Council include a dedicated group of voluntary health agencies that believe in coming together to ensure that all patients with chronic diseases and disabilities are heard.

I understand that learning about every patient you serve would be impossible, but I hope you still will take the time to understand the overall complexity of living with chronic illness. Look at patients not as a homogenous group that uses pharmaceutical treatments but as individuals fighting to make each day a little better for themselves. By doing this, you will quickly see that each patient has her or his unique story and a unique disease. Some may suffer from multiple conditions, thus complicating their treatment strategy, but the one thing they have in common is that they deserve to have their voices heard.

Trust me when I tell you that a patient is like no other expert. Patients can quickly suggest ways to streamline your processes, make cost-effective changes, and increase overall efficiency. I understand that not all of their suggestions can be utilized, but don’t they deserve at least to be invited to the table? Together, we can make a difference for all patients by just listening and learning. I hope you will take the lead.