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Rare Diseases

The Complex Ways Insurance Companies Stay One Step Ahead of Legislators

Scott Bruun

Executive Director, Chronic Disease Coalition

Access to care for millions of Americans with pre-existing medical conditions enjoys strong, bipartisan support from congress and state legislatures. Yet for all the laws designed to protect patients and ensure access, can we say that America’s patients are protected from abuse and discrimination? Sadly, the answer is “no.”

Two decades into the 21st century, Americans with chronic diseases still face discrimination, and the most insidious form of modern disease discrimination happens at the institutional level. The Affordable Care Act, for example, prohibits insurers from denying coverage for people with pre-existing conditions. The law does not, however, prevent insurers from exploiting or creating loopholes to do the same thing. 

Disease discrimination

The modern methods of disease discrimination, propelled through these legal loopholes, are many and varied. The most common are the methods used to limit access to doctor-recommended medical treatments. 

“Step therapy” is one such tool widely exploited by insurance companies. With step therapy, insurers require doctors to prescribe the cheapest treatment first, even when that course is contrary to a doctor’s best judgement. It is only upon failure of those initial treatments that doctors can prescribe treatments most suitable to the individual patient’s needs. 

The insurer clearly benefits in this situation by avoiding or delaying the need to pay for more expensive treatments. The problem is that many chronic diseases are “aggressively regressive.” Aggressive in that they usually advance quickly in severity, and regressive in that the damage caused by many diseases is irreversible. Diseases like multiple sclerosis, lupus, rheumatoid arthritis and ankylosing spondylitis all fall into this category, and patients with these diseases (and countless others) are increasingly stuck in step therapy protocols.

Another loophole-driven impediment to access includes “copay accumulators.” 

As background, many manufacturers have assistance programs that help patients cover the cost of copay or deductible requirements. This is often used for biologics and other complex medications. 

Under copay accumulator programs, insurers fail to count the funds provided by others on behalf of patients toward a patient’s personal financial obligations. In other words, if someone else pays, it doesn’t count. 

Worse, co-pay accumulator programs are intentionally convoluted, meaning a patient will often not even see that the copay and deductible costs being paid are not being credited toward their own accounts. 

While being arbitrary and unfair, insurance company practices may also limit treatment choices and access, forcing patients into narrower plan options or inadequate care. 

Looking for loopholes

It’s an arms race. Insurers look for unique and sophisticated ways to lower their costs through access restrictions. Legislators generally look to enhance access, but the process is slow and inefficient, often resulting in a hodgepodge of state and federal rules and gaps in patient protections. 

All of this speaks to the need for sophisticated and broad-based patient advocacy. Individual patients and patient groups, caught between health insurers and healthcare policymakers, must be increasingly sophisticated in their ongoing efforts to ensure full and affordable access to care. 

Toward that, leveraging patient groups, patient education campaigns, social and earned media, coalitions, and legislative outreach has never been more important.

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