In keeping with the title of the Institute of Medicine report “Essential Health Benefits Balancing Coverage and Cost,” HHS was seeking input on how best to meet the dual goals of balancing the comprehensiveness of coverage included in essential health benefits and affordability.
HHS was also seeking input on which policy principles and criteria should be taken into account to prevent discrimination against individuals because of their age, disability status, or expected length of life as the Affordable Care Act requires.
Jan Chambers, president and founder of the NFMCPA, stated the following remarks at the hearing:
"My name is Jan Chambers. Thank you for this opportunity. I am the president of the National Fibromyalgia & Chronic Pain Association. With the new diagnostic criteria being adopted for fibromyalgia, approximately 6 percent, or between 16-18 million Americans either have primary or secondary fibromyalgia.
Fibromyalgia exhibits with body wide pain, sleep disturbances, stiffness, cognitive dysfunction, central nervous system sensitization where the autonomic nervous system, the fight or flight, stays stuck in the “on” position. Anxiety and depression also occur. Left un-managed, fibromyalgia symptoms worsen over time, and disability often occurs. Disability costs more to society, individuals, and communities.
Until significantly more research sheds further light on the cause and cure for fibromyalgia and its relationship to over 50 overlapping conditions, we need every tool available to help manage the disabling effects of this illness.
My two points today are:
1. Research validates that early diagnosis and management interventions for chronic illnesses, including fibromyalgia and chronic pain, produces better outcomes for patients in terms of quality of life and lifetime costs of the illnesses. The progression of an illness is slowed and suffering is minimized.
2. Step therapy programs dictate and override the attending physician’s proper role to manage the treatment for his or her patient. There is strong potential by the Patient Protection and Affordable Care Act for processes to be put in place for chronic pain patients. A process works for an appendectomy or a broken arm, but not chronic pain due to the intricacies of a patient’s health.
Clearly from the IOM Pain Report in America issued in the summer of 2011, chronic pain patients, 116 million Americans, do not have adequate treatment options or there wouldn’t be so many people in chronic pain and with disability from it. Further limiting their options by limiting access to care is naive to the long-term outcome of pain management. Chronic pain costs American society $565-635 billion annually. Restricting a physician to use a limited range of tools causes more pain, suffering, and emotional trauma to the patient and their family."
“For the record, I defend the right of fibromyalgia patients' access to any medication or treatment that alleviates their pain in any degree. No one has the right to condemn another person to live without access to care. Intimidation, bullying, or an effort to dissuade someone's belief in their mode of treatment or medications is offensive. Full disclosure of treatment outcomes, pharmaceutical side effects, risks for non-treatment, and evaluation of long-term benefits allows for an informed decision by the patient.
“Many people receive relief outside the medical, scientific options. Applying a scientifically objective test does not work for non-scientific treatments. A new paradigm, perhaps simply patients who report improvement on a large scale is needed. While I think there are charlatans preying on a vulnerable population, I would raise a word of caution when necessary.”
Essential Health Benefits Categories:
The Affordable Care Act identifies ten categories of items and services that must be included in the definition of essential health benefits. At least the following ten categories must be included in the definition:
• Ambulatory patient services
• Emergency services
• Maternity and newborn care
• Mental health and substance use disorder services, including behavioral health treatment
• Prescription drugs
• Rehabilitative and habilitative services and devices
• Laboratory services
• Preventive and wellness services and chronic disease management
• Pediatric services, including oral and vision care