How to improve chronic disease management

For millions of Americans, chronic diseases represent a daily struggle, both physically and emotionally.  From the moment of diagnosis, patients are forced to confront an unnerving reality: “Your condition can be managed, but never cured.”

Each day, countless rheumatologists across the country are forced to deliver such diagnoses.  And despite incredible advances in treatment for rheumatic diseases like rheumatoid arthritis and lupus, patients find little comfort knowing that their lives are inexorably changed.

{mosads}For this reason, my colleagues and I at the American College of Rheumatology (ACR) are greatly encouraged by the Senate Finance Committee’s decision to address chronic conditions head on.  Through the establishment of a working group, lawmakers are now contemplating reform measures to improve the delivery of care for those battling chronic disease. As legislators craft measures for change, it is imperative that they consider the needs of patients with rheumatic diseases as well as the insight of rheumatologists who are uniquely positioned to offer guidance on this subject.   

Indeed, while often out of the public eye, inflammatory rheumatic diseases are the nation’s leading cause of disability, impacting more Americans than heart disease, cancer or diabetes. In the United States, the numbers of patients with rheumatoid arthritis exceeds 1.5 million.  Left unchecked, rheumatic conditions – which are caused by an immune system gone awry – unleash an unrelenting attack on a person’s joints, muscles, bones and other organs. The result can be severe pain, organ damage, and long-term disability, and in the worst case, death. 

Through the consistent management of the symptoms associated with chronic disease, rheumatologists have seen what works for patients, especially those battling a host of comorbidities that complicate disease management.  But our experience has also painted a vivid picture of what is yet to be done – not only for those with rheumatic disease, but also for all Americans living with chronic illness.

It is imperative that policymakers address the rising cost of specialty tier medications for insured patients. In rheumatology, biomedical research has led to the development of biologic therapies for chronic disease management. While these drugs are more effective than previously available medications, they come with a staggering price tag. That’s because a growing number of insurers place these therapies on so-called “specialty tiers,” which require patients to pay a percentage of the total drug cost – often 25 to 50 percent – rather than a fixed copayment amount. With the annual cost of biologic therapies ranging from $12,000 to $48,000 or more, patient copays can easily reach thousands of dollars per month. Due to the high cost, patients often underutilize these needed therapies by skipping doses or going without treatments entirely. Congress needs to address exorbitant patient cost-sharing requirements, something that could be immediately achieved through support of the Patient’s Access to Treatment Act (H.R. 1600), which limits specialty drug copays for patients with many chronic, disabling, and life-threatening diseases.

Placing limits on cost sharing is crucial, but must take place in addition to systematic reform, which guides patients more quickly to the treatment they need.  Therefor, it is important that policymakers also adopt measures to prohibit overly restrictive provider networks and drug formularies that, while intended to control costs, are simply limiting access to care.

In rheumatology, the first weeks and months following the onset of rheumatic disease symptoms are known as the “window of opportunity,” and it’s crucial that patients have access to specialists who can start appropriate treatments in that time period to avoid long-term complications.  Meaningful reform would allow patients ready access to specialists in their health plan at all times, and in their geographic area whenever possible.   Going even further, Congress should work with CMS to increase provider network transparency and accountability, and implement a uniform and centralized directory for patients to access and providers to update. 

Increasing access to affordable, high quality care through limited patient cost sharing and expanded provider networks are just the first steps in addressing the challenges of chronic conditions.  Nevertheless, they will have an immediate patient impact.  These reforms can also reduce costs by more compressively addressing health needs from the start, thereby preventing frequent doctor visits and expensive hospital stays. According to new data from the CDC, state-level medical costs for arthritis average more than $1.6 billion, suggesting significant cost-saving opportunities through the pursuit of common-sense policy reforms.

In the end, our nation must learn to better manage chronic conditions just as patients do daily.  I applaud policymakers for enlisting the opinion of experienced clinicians from across the healthcare delivery system to find a solution.  Patients and our nation cannot afford to wait.

St.Clair is president of the American College of Rheumatology.