Dear Secretary Sebelius:

We, the undersigned, are patients and their advocates who live with chronic health conditions and disabilities. We stand together to ensure that the needs of patients, no matter our illness, are addressed in the Essential Health Benefits (EHB) package currently under review by the U.S. Department of Health and Human Services (HHS). As you make decisions about the Essential Health Benefits package, please don’t overlook us. We are essential.

We believe:

• Patients, particularly those with chronic conditions and disabilities, need access to comprehensive, affordable and quality health care.

• We are concerned that the approach HHS is taking in defining Essential Health Benefits will not provide the necessary coverage to meet our needs.

• By leaving the benefit design to the states to decide will result in different types of coverage and services for patients depending on where one lives, thus creating more than 50 systems of inequitable care.

• We believe HHS has not properly defined each of the 10 categories of services mandated by the law but instead is allowing the states to decide on something that should be defined at the federal level.

• HHS has not spelled out what coverage and services are “medically necessary” when it defined the Essential Health Benefits, as it is required to do by the law.

• HHS did not provide details on what services must be covered except in one instance -- prescription drugs. In this circumstance, HHS is proposing to permit plans to cap benefits by limiting formularies to one drug per class. This represents a step back from the coverage and protections established under Medicare Part D. A robust formulary is necessary because not all patients respond to medicines in the same way; physicians may need to change medicines over the course of an illness; and patients taking multiple medicines need alternatives to avoid harmful interactions. Patients need access to a full range of medicines.

• HHS did not include any patient protections that every plan must contain. The law states that the Essential Health Benefits package must ensure there is no discrimination and must meet the needs of various populations, including those with disabilities. Patients, particularly those with chronic conditions and disabilities, need protections against limits on doctor and lab visits, cost sharing, specialty tiers, and utilization management techniques that limit patents’ access to care and treatment. We also need an appeals process, which was not addressed in the bulletin.

• HHS did not address the need for access to specialist care, which most patients with chronic conditions need, nor did you define what preventive services must be covered.

We urge you to correct the many deficiencies outlined above to ensure that patients, particularly those with chronic conditions and disabilities, will have access to comprehensive, quality and affordable health care.  A benefit package too narrowly drawn will not meet the needs of patients like us. We deserve access to affordable, high quality health care because we are all essential.  We believe that patient needs and protections must remain the highest priority. Don’t count us out.