New 'essential benefit' rules need to empower doctors, patients

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The exchanges are slated to be operational by 2014. Shortly after the public comment period closes, however, the Department of Health and Human Services will issue its official EHB rules. The particulars are hugely consequential.

If the EHB is too loose and insurers aren't required to provide coverage for some crucial treatments, patients in the exchanges will be forced to pay for
those treatments out-of-pocket. Many won't be able to afford such expenses and will simply have to go without care.

Therefore, it's vital that the EHB mandate is sufficiently expansive. In particular, exchange patients suffering from serious chronic illnesses need to have access to the advanced drugs and specialty care required to control and combat their conditions.

The issue of chronic disease management is especially near and dear to me. I work for an organization that represents and advocates on behalf of the some 50 million Americans suffering from autoimmune disorders.

That figure represents fully 20 percent of the national population. And autoimmune disorders are the number two cause of chronic illness in the country.

Basically, autoimmunity means the body's defense system has malfunctioned and is attacking itself. There are over one hundred known autoimmune
diseases, some of the most prominent being lupus, Type 1 diabetes, multiple sclerorsis and Crohn's disease.

Approximately 23 million patients are expected to be enrolled in the exchanges. If general population trends hold, approximately 4 million of them will be suffering from autoimmune diseases in need of care.

Autoimmunity treatment is particularly reliant on specialty medical services. Both diagnosis and disease management depend on a broad range of
specialists, including rheumatologists, pediatric gastroenterologists, and neurologists. Autoimmune diseases are unique in that they typically affect many different organs throughout the body.

Robust EHB rules would ensure that autoimmune patients -- and the many other exchange enrollees suffering from chronic illnesses requiring sustained
specialty care -- will have the insurance coverage they need to pay for such services.

Likewise, the specific pharmaceutical scripts needed to effectively combat an autoimmune disorder vary widely from patient to patient. After all, no two people have precisely the same physiology. Drug regimens need to be adjusted accordingly.

So physicians need to have the flexibility to prescribe whatever set of drugs they think are best suited to their particular patient. Their options should not be severely circumscribed by insurers.

Doctors treating exchange patients should be empowered to recommend off-label drug use if that's what's most promising. And they shouldn't be forced to use generic alternatives to brand names drugs -- sometimes generics aren't as effective as the originals.

The officials crafting the EHB requirements should look to Medicare Part D for inspiration. This prescription drug program employs a robust formulary
that, by design, requires coverage for "all or substantially all" medicines in the six major pharmaceutical classes, including autoimmune treatments.

In large part because of this robust formulary Part D is incredibly popular. Surveys of enrollees routinely clock in satisfactions rates well over 90
percent.

The EHB needs to be similarly expansive. Autoimmune patients will lean heavily on their insurance plans to pay for the drugs they need to control their conditions. If insurers don't provide sufficient benefits for these treatments, patients will get stuck with massive out-of-pocket expenses. Many won't be able to pay and they will effectively lose access to necessary treatments.

Plus, a robust EHB will cut down on long-term healthcare costs. Giving patients access to the preventative medicines they need today helps stave off more expensive conditions tomorrow. Work published in the Journal of the American Medical Association finds that Part D's robust drug benefits generate about $1,200 in savings per beneficiary every year in the form of reduced health costs.

Establishing the minimum essential benefits for the new insurance exchanges is an immensely important job. As federal officials put the final touches on
their regulatory ruling, they need to keep in mind the millions of autoimmune patients that will depend on these exchanges for coverage. Robust minimum benefit requirements will ensure these patients get the treatments they need.

Ladd is the president and executive director of the American Autoimmune Related Diseases Association.